tag:blogger.com,1999:blog-16629968359341842902024-03-13T11:55:49.686-04:00MaryEllen, Julianna and JackSingle Mom by choice, breast cancer, infertility, surrogacy, prematurity and deafness. Our busy life!!MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.comBlogger300125tag:blogger.com,1999:blog-1662996835934184290.post-54102281557740523742020-02-03T15:03:00.000-05:002020-02-03T15:02:59.969-05:00More SurgeryI haven't written on here in awhile but I am going to post about this since it cancer related.<br />
<br />
After I lost one breast because I had a DIEP flap failure they placed a tissue expander and after I finished chemotherapy they exchanged the expander with a breast implant. I never really liked it because it is hard and cold most of the time and the shape is considerably different than my DIEP breast. It is under the muscle and it can be painful at times.<br />
<br />
During my chemotherapy I developed peripheral neuropathy in my hands and feet. This is a known side effect with both chemotherapy drugs that I received, carboplatin and taxotere. It got slightly better after I finished the chemo but then it got worse and worse over time. My fine motor ability with my hands is now so bad that I can't button a button or do simple things like open a bandaid or peel a stamp off the backing.<br />
<br />
My neurologist does EMGs and she sees it worsening but really doesn't have any answers. She says it usually doesn't get better but it shouldn't be getting worse so she thinks it is possible there is another cause. She sent me for MRIs of my neck and back. They do show some abnormalities but it is unlikely the cause.<br />
<br />
Not long ago I read an article about the FDA holding hearings about breast implants. They have been found to cause cancer and they are also causing autoimmune illnesses in women. <a href="https://www.washingtonpost.com/health/2019/03/26/women-need-better-information-breast-implants-panel-says/">https://www.washingtonpost.com/health/2019/03/26/women-need-better-information-breast-implants-panel-says/</a><br />
<br />
I started researching this further. I found many articles and groups that describe the symptoms. <a href="https://healingbreastimplantillness.com/breast-implant-illness-symptoms/">https://healingbreastimplantillness.com/breast-implant-illness-symptoms/</a>.<br />
<br />
I asked the neurologist if she thought the breast implants could be causing my issues and she said she didn't know of any scientific evidence showing that they do. Time went by. My symptoms worsened. My hands are incredibly swollen. I have severe joint pain, enlarged lymph nodes, difficulty walking, severe fatigue, confusion, twitching to my face and hands, muscle pain, etc. I went to see a Rheumatologist. She did many blood tests and quite a few of them are grossly abnormal. My c-reactive protein is 15. If it is over one that suggests very high inflammation and suggests high risk for heart attack. She said 15 is suggestive of a huge inflammatory response. My IgG and IgA are also incredibly high. She said she would diagnose me with Rheumatoid arthritis but she thinks it is the breast implant. She said she is getting 5 or 6 women a month with these same symptoms. Many are so sick they are using walkers. They are removing the implants and they are getting better.<br />
<br />
I went to see a plastic surgeon who is highly recommended and happens to be located near me. He said he is taking implants out daily and most of the women are getting better. He said I can do a lat flap fro reconstruction but it is a huge surgery and I am reluctant to do it. He said he can try to make me a new breast using only fat transfer but that it will take 4 or 5 procedures, all short and out patient. I decided to try this method.<br />
<br />
So tomorrow is the day. It is a one day surgery if there are no complications. When they say "If there are no complications...." I always get worried since I have had a lot of rare complications and so have my kids. I am hoping for the best. He is going to take the implant out enbloc, do a full capsulectomy, repair my muscle and transfer a small amount of fat into the breast. He said he will transfer about 125 cc of fat in and we will hope for at least 60% to vasculate. They can do the fat transfer again in three months and at that time they can transfer 250 cc. Each time they can double the amount of fat they transfer and they hope for a 60% rate of vasculation. My breast implant is 625 cc.<br />
<br />
When they remove the breast implant and capsule they have to send any fluid surrounding it to pathology to test <span style="font-family: inherit;">for <span style="color: #111111; font-size: 15px; line-height: 1.46667em;">breast implant-associated anaplastic large cell lymphoma. (BIA-ALCL). It is rare so I </span></span><br />
<span style="font-family: inherit;"><span style="color: #111111; font-size: 15px; line-height: 1.46667em;">am not going to stress over it but I will be happy to get the all clear. </span></span><a href="https://www.breastcancer.org/treatment/surgery/reconstruction/types/implants/special-report">https://www.breastcancer.org/treatment/surgery/reconstruction/types/implants/special-report</a><br />
<br />
I am hoping that all these symptoms will go away when the implant is removed. I will post an update when it is out.MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com0tag:blogger.com,1999:blog-1662996835934184290.post-44025537990314767632017-03-14T12:54:00.001-04:002017-03-14T12:54:18.610-04:00Jack Is Learning The English Language<br />
<br />
Jack is finally taking off wit his cochlear implants. He is starting to speak in complete sentences. He knows how to put his Neptunes (off the ear implants) on by himself. We recently went to the audiologist for a mapping and to try him with the Naida implant processor. The Naida is a behind the ear (BTE) unit.<br />
<br />
We had some problems with the Naidas falling off quite frequently. I was able to find a set of super hero covers with a leash that will make us losing the processors less likely. I also went to Michael's and bought some clear plastic cord so I could make a loop to hold them on his ears. They have ear hooks but they don't hold well, especially for an active 4 year old.<br />
<br />
Jack recently had a word recognition test in school. He was in the sound booth. The audiologist would say a word (with her mouth covered so he can't read her lips) and Jack would point to a picture of what she said. For instance, she would say train and he would point to the picture of a train. Jack scored 80% on the test which is pretty good considering he is profoundly deaf without the implants. There are some limitations to the test. He is four and he doesn't have the greatest attention span so he may get things wrong simply because the picture of another object interests him more. Also there is no background noise in a sound booth. He has a great deal of difficulty hearing in situations where there is a lot of background noise.<br />
<br />
Jack is taking swimming lessons, ice skating lessons and will soon be starting T-ball. I sign him up for these things but I am always worried that he won't be able to do it because of his hearing. Swimming is pretty good because it is one on one. He can wear his water proof implants for swimming but he doesn't hear so great there because it echos in the pool area. He does seem to enjoy it and even if he can't hear her he can follow her visual directions. With ice skating there were only two kids in the group and he seemed to do ok. The teacher turned out to be Julianna's figure skating coach. She knows Jack very well and it worked out fine. We are going to sign up for the next session. T-ball will start in April. He loves to throw the ball and hit with the bat. I know he will enjoy it but I am worried that he won't be able to hear from the outfield or with people yelling from the sidelines.<br />
<br />
Jack doesn't know that he is any different from anyone else. Obviously I would never tell him he has any limitations. The other kids in his school all have hearing loss and wear similar equipment. At some point he will realize that he is a little different. I am not sure how that will go. For now I am just trying to do everything with him and hope for the best. He really is doing great. They wanted me to put him in balance therapy due to his balance issues from his vestibular damage. It turned out that it was very expensive and not covered so I put him in ice skating instead. Why not learn balance from real life experiences? He is as good if not better than the other kids his age who are doing it. He is so determined. He can't always express himself with words but he does with his actions. If he wants to do something he does it. I hope that stays with him.<br />
<div>
<br /></div>
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUGc_H5v0bOSOU2BcF9fzrLWXHE53o90vJ4l-JhOsFOSbGJbVb_H7_OaterhVxaT4t2Sgsai22wGvsp5Y2Jt4jVUWe8m8IopvMg7kqGKY-aBPfwQQTDjuvjj9M2YSKpfXRJiAG_DMnMhOI/s1600/20170219_134806.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUGc_H5v0bOSOU2BcF9fzrLWXHE53o90vJ4l-JhOsFOSbGJbVb_H7_OaterhVxaT4t2Sgsai22wGvsp5Y2Jt4jVUWe8m8IopvMg7kqGKY-aBPfwQQTDjuvjj9M2YSKpfXRJiAG_DMnMhOI/s320/20170219_134806.jpg" width="320" /></a></div>
Jack and Julianna riding their bikes.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0JAKBZ2sKprIuMpDHmbXBfSz5Z2gxx2hh65LZbra_l5b9rIiXqswmxZ8w9O6OT95_u9HHFto7-zyUEiunyrnhwJygN2L2IYDyO1-RKxWPMfdJGlsdG5BpYBURuJ_vYHa2oL080V-A806Z/s1600/20161104_172005.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0JAKBZ2sKprIuMpDHmbXBfSz5Z2gxx2hh65LZbra_l5b9rIiXqswmxZ8w9O6OT95_u9HHFto7-zyUEiunyrnhwJygN2L2IYDyO1-RKxWPMfdJGlsdG5BpYBURuJ_vYHa2oL080V-A806Z/s320/20161104_172005.jpg" width="240" /></a></div>
Jack in his ice skating lesson.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigYBAGc6CDxPCW9ihaUpkQXZyhUySfNukLQV2IVQu4xItaXyt60wqGAy3-wKwkxWYrY1CbEKfv5bYNzkR-AfLoS_aXkiJackbbYw-QrNHZ4Rqu_-O2p081wCvfexMP9EAUMVzdoTej23tA/s1600/20170108_195156.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigYBAGc6CDxPCW9ihaUpkQXZyhUySfNukLQV2IVQu4xItaXyt60wqGAy3-wKwkxWYrY1CbEKfv5bYNzkR-AfLoS_aXkiJackbbYw-QrNHZ4Rqu_-O2p081wCvfexMP9EAUMVzdoTej23tA/s320/20170108_195156.jpg" width="240" /></a></div>
Jack with Julianna as she shows off her figure skating medals.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhj-_Dg-HJ6ZjwqyHfBm6YZYgI_gmp2CD5PwYeVQd9ZWZPbGReO0ayfHNol26uEnntL44lQoSDFu5gOTkX1wFLPbageyqFb0NVdXbRcm8epcqljS3sj5www772jueZhvjndLJNW26Ce5qqz/s1600/20170207_162553.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhj-_Dg-HJ6ZjwqyHfBm6YZYgI_gmp2CD5PwYeVQd9ZWZPbGReO0ayfHNol26uEnntL44lQoSDFu5gOTkX1wFLPbageyqFb0NVdXbRcm8epcqljS3sj5www772jueZhvjndLJNW26Ce5qqz/s320/20170207_162553.jpg" width="240" /></a></div>
Jack trying his new toothbrush. Right after this he brushed the dog's teeth with it.MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com0tag:blogger.com,1999:blog-1662996835934184290.post-23600843127622802862016-10-09T19:55:00.001-04:002016-10-09T19:55:41.582-04:00Seven Years Since Cancer Sugery<br />
Today marks seven years since I had my first cancer surgery. So much has happened since then. I am so grateful.<br />
<br />
Back then I was given a lot of scary information. Some of it was true and they left a lot of other things out. It was a long road but I am happy to have gotten through it. I do have some pretty big side effects from the chemo and the surgeries. the worst is the peripheral neuropathy from the chemo drugs, It really has changed me from a super active person into a pretty inactive one. When I started the cancer journey I remember asking if I would be normal after all of it. They always answered that I would have a new normal. So, I guess this is my new normal. It is not as great as my old normal but I am still extremely grateful.<br />
<br />
It is harder for me to run after a 3 year old than it would have been. But not too many 51 year olds have a 3 year old anyway. After HELLP syndrome and cancer it was pretty unlikely I would ever have another baby. That was so sad to me. But, despite all the obstacles I did. Jack is my bonus baby. He brings us great happiness. He is a fighter and a survivor. I think he is destined to do great things.<br />
<br />
Julianna was 1 when I got cancer. I remember thinking how she would be so alone if I died. No dad. no siblings. She wouldn't even remember how much she was loved. She is now 8. She is beautiful, smart, athletic and kind. I tell her everyday how much she is loved.<br />
<br />
A lot of trying things have happened but a lot of great things have happened too. The good out shines the bad and we really have so much to be tankful for!!!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNEKWxuEad7b6XkSeObwAqWze5iLNV_BYeAFlJt8G5G10NZMvJ0phPOZkqapZT8VyBxYyyU8PxMAGB1AiDUCbjpFdTGAPmv-2ARplTdj1qEaGQFAi6pg45IRNedW6pzosWYGo5TIlWINHo/s1600/Life+is+a+gift1643502_IMG955128.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNEKWxuEad7b6XkSeObwAqWze5iLNV_BYeAFlJt8G5G10NZMvJ0phPOZkqapZT8VyBxYyyU8PxMAGB1AiDUCbjpFdTGAPmv-2ARplTdj1qEaGQFAi6pg45IRNedW6pzosWYGo5TIlWINHo/s320/Life+is+a+gift1643502_IMG955128.jpg" width="320" /></a></div>
<br />
<br />
<br />
This picture was taken from our dock this summer.MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com1tag:blogger.com,1999:blog-1662996835934184290.post-25654589590356205632016-09-07T09:36:00.001-04:002016-09-07T09:36:43.603-04:00New School Year!!!Jack started preschool yesterday and Julianna started 3rd grade today. They are getting so big so fast.<br />
<br />
Jack is getting a lot more words but I wouldn't really say that he is "talking" in any way that anyone other than I can understand. He is certainly hearing but I do not know how much he gets. When he is looking right at me he is actually understanding a lot. When he is not looking at he he hears, but I am not sure how much he understands. I was told that learning speech requires hearing and overhearing. Kids overhear so much of other people's conversations. Jack really can't overhear so it limits him a lot.<br />
<br />
Jack's birthday is November 28th. In my school district the birthday cutoff is December 1st. If a child is 5 before December 1st they can start kindergarten that year. Jack will be 5 next year two days before the cutoff. I asked the special ed coordinator if I can hold him back and start him the next year. She said I can do that but then he will lose all his preschool services. He gets speech therapy, occupational therapy, physical therapy and services of a teacher of the deaf. There is no way he will be ready for kindergarten next year. I have the choice to send him to kindergarten at the deaf school. They have a kindergarten first grade combo class that is located in a public school. It is in East Islip which is almost an hour bus ride for Jack. If he goes to this kindergarten I can always have him repeat kindergarten in our home district. I know it is a year away but all the planning will have to be done in a few months because there are limited placements. All the placements require tons of meetings and evaluations and it can be an exhaustive process. I would guess all the decisions will have to be made by January.<br />
<br />
When Julianna started kindergarten she was writing her name, reading many words and understanding some math. Her birthday is January 8th so she was one of the older kids in the class. It seems like Jack is years behind where Julianna was at this age and she was testing behind for a long time. Jack has progressed the most physically. He was testing in the 3rd percentile in overall physical assessment just over a year ago. Now he can do anything a child his age can do and more. He is very physical and he really likes sports. I am going to get him into some organized sports activities but he may have issues following directions.<br />
<br />
Julianna is loving her new school. She enjoys sports and loves to read.<br />
<br />
Here are some first day pictures.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbeDiJtWHm1XohvQ635fGmLRYXwMC_o-7OeRyitkCFzuFbTfXqzKcgpQ52X7BHVi11nvSHdPlOE8Xto8rew5JohKjZclwV61xqq8slT97kmN8JFWeVwMOV9ysO_NDDAAdx4cwRWSGiWUlt/s1600/20160906_080123.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbeDiJtWHm1XohvQ635fGmLRYXwMC_o-7OeRyitkCFzuFbTfXqzKcgpQ52X7BHVi11nvSHdPlOE8Xto8rew5JohKjZclwV61xqq8slT97kmN8JFWeVwMOV9ysO_NDDAAdx4cwRWSGiWUlt/s320/20160906_080123.jpg" width="180" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU7I2FKKIrU6jziTcVK68AtZUGKFi8w1OuHZbP4FJ3A343L767Sz5TcFStrqPLO1MYN5akpzgOLo6MLk0u83vcA9UKc348hHDtxPYQDMldydSXd0q2xDM6SsbIPvU9cUpghs3pe8Qgz4Kj/s1600/20160906_080137.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU7I2FKKIrU6jziTcVK68AtZUGKFi8w1OuHZbP4FJ3A343L767Sz5TcFStrqPLO1MYN5akpzgOLo6MLk0u83vcA9UKc348hHDtxPYQDMldydSXd0q2xDM6SsbIPvU9cUpghs3pe8Qgz4Kj/s320/20160906_080137.jpg" width="180" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaOluqmtP9puOd_Ke3yUqW9ljqI1b0cdwa4q3ZH55cuEoESSTxD2stIIeH2W-Lq40L-IiknRFtS85WaF4nKbhCgtOwpXSr5OEp_-wnmfeR-NxLqWD5yY0W2nUrjwufvSKKGUqIpWbP6oFE/s1600/20160907_081619.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaOluqmtP9puOd_Ke3yUqW9ljqI1b0cdwa4q3ZH55cuEoESSTxD2stIIeH2W-Lq40L-IiknRFtS85WaF4nKbhCgtOwpXSr5OEp_-wnmfeR-NxLqWD5yY0W2nUrjwufvSKKGUqIpWbP6oFE/s320/20160907_081619.jpg" width="180" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0AZOhyUPzchSwkkBbyhR9zAERcL-ttI9kLA4WVUuLjZoXRdbzvK4sUy2O8urasyHt-l9wwvWv54YsAsf64oruPAsM5VnoBX_cswmc9v89Z4xhyY6Ebhyphenhyphen82RFr8ygxAGVCvSQ8jteqh6ai/s1600/20160907_081630.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0AZOhyUPzchSwkkBbyhR9zAERcL-ttI9kLA4WVUuLjZoXRdbzvK4sUy2O8urasyHt-l9wwvWv54YsAsf64oruPAsM5VnoBX_cswmc9v89Z4xhyY6Ebhyphenhyphen82RFr8ygxAGVCvSQ8jteqh6ai/s320/20160907_081630.jpg" width="180" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEillZupqdrVejXyd9baM-trL4EfHP0clYL-_9baYpr-tygSDpp2roFT-baM7YcFaqu6vms-ERdYbOIoJqPNi_Y-NLsNgSL6U76Et4ePwfqirSKR95nrqEkSfuKM_MS6l1-MZcv2nCjc22rz/s1600/20160907_082250.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEillZupqdrVejXyd9baM-trL4EfHP0clYL-_9baYpr-tygSDpp2roFT-baM7YcFaqu6vms-ERdYbOIoJqPNi_Y-NLsNgSL6U76Et4ePwfqirSKR95nrqEkSfuKM_MS6l1-MZcv2nCjc22rz/s320/20160907_082250.jpg" width="180" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_menGXDghyphenhyphenhR_aDbm2UxdQWqwXD1ZbVeefOzRGxkEjHSV7rYOEOVUoPBs7sy4G1Rwz8pCV6-gCKykbiPCHwqe4qF-vnGHF0jZBBGOZbocxtWtD2A8ntlhOK0Es7MGb23UKZ7RCqDyTjYs/s1600/20160907_081712.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_menGXDghyphenhyphenhR_aDbm2UxdQWqwXD1ZbVeefOzRGxkEjHSV7rYOEOVUoPBs7sy4G1Rwz8pCV6-gCKykbiPCHwqe4qF-vnGHF0jZBBGOZbocxtWtD2A8ntlhOK0Es7MGb23UKZ7RCqDyTjYs/s320/20160907_081712.jpg" width="180" /></a></div>
<br />
<br />MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com2tag:blogger.com,1999:blog-1662996835934184290.post-79910343217594447922015-10-07T13:30:00.000-04:002015-10-07T13:30:01.881-04:00Jack Is Being Discharged From Physical Therapy<b><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small; line-height: 12.896px;">From small things, mama</span></b><br />
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small; line-height: 12.896px;"><b>Big things one day come</b></span><div>
<span style="color: #222222; font-family: arial, sans-serif; font-size: x-small;"><span style="line-height: 12.896px;"><b>~ Bruce Springsteen</b></span></span></div>
<div>
<span style="color: #222222; font-family: arial, sans-serif; font-size: x-small;"><span style="line-height: 12.896px;"><b><br /></b></span></span></div>
<div>
<span style="color: #222222; font-family: arial, sans-serif; font-size: x-small;"><span style="line-height: 12.896px;"><b><br /></b></span></span><br />
Jack's physical therapist Debbie advised me today that she thought he was ready to be discharged from Physical therapy. She said he is not really at his exact age level but he is progressing so fast that she doesn't think he really needs her help anymore.<br />
<br />
This amazes me. At one point I was told it was unlikely he would ever roll over let alone walk. He walks, jumps and runs now. He is so happy. I am so thankful to Debbie Fuggini and Jodie Collins for the amazing therapy they gave Jack.<br />
<br />
I spent so much time worrying and taking him from appointment to appointment. The fact that it has paid off makes me so grateful and proud of him for all his hard work.<br />
<br />
Jack is finally saying some words. He goes to the Deaf Infant Program for 7 sessions a week. They are amazing there and he is really starting to pick it up. He always tries to copy everything and he very happy to please the therapists. I love this program but he is going to age out of it at the end of December. I am currently going to see some programs. I only want him in an oral program not sign or total communication. It is hard to find even though we are in such a populated area,<br />
<br />
They say it takes a village to raise a child. This is especially true with a child who has special needs. There are so many people responsible for Jack's success and I am so thankful.</div>
MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com0tag:blogger.com,1999:blog-1662996835934184290.post-2242832586885326942015-09-13T11:29:00.001-04:002015-09-13T11:40:28.916-04:00Pictures<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4zSTJAJqjva3qMnbFj_hjELwOUqTXNrxAXrXc2wW9eaMy3f9iDPlyTqJPnVFEtB3Tjn-yEbwcKptDH7sX8zs-TyMlbsIev4qFvzyo_KeYQUUxiCbOxW0MB0FS1ZUxoTcx-caBn261b5Bf/s1600/JackandPopPop.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4zSTJAJqjva3qMnbFj_hjELwOUqTXNrxAXrXc2wW9eaMy3f9iDPlyTqJPnVFEtB3Tjn-yEbwcKptDH7sX8zs-TyMlbsIev4qFvzyo_KeYQUUxiCbOxW0MB0FS1ZUxoTcx-caBn261b5Bf/s320/JackandPopPop.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small; text-align: start;">Jack with Pop-Pop December 2013</span></td></tr>
</tbody></table>
<br />
<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVOx7Sz9dQm0EB4ZCjGjGZfLWV69O8Gpmq9KHCMlLJx1-plkNhz6Tc8h-a2vxUHYFkrDSPTds7Pd1ohRKndvewZOli_JyA3yxa4WMHOnapj7hG8QKcXS_-B1geSKfSYhizsxDD4jHAirV5/s1600/20150629_135601.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVOx7Sz9dQm0EB4ZCjGjGZfLWV69O8Gpmq9KHCMlLJx1-plkNhz6Tc8h-a2vxUHYFkrDSPTds7Pd1ohRKndvewZOli_JyA3yxa4WMHOnapj7hG8QKcXS_-B1geSKfSYhizsxDD4jHAirV5/s320/20150629_135601.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small; text-align: start;">Jack with Dr. Roland (his cochlear implant surgeon) spring 2015.</span></td></tr>
</tbody></table>
<br />
<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrKe0Hh0s2EGnlVQY4p5GPzVEtvdJzK76bkC90CE6DhhExN8l4EdiV4ZMQOn6T1VzvqAE_qZf1GDxuJDbDaL5PZXp6x9hSZIq1fGI0BBpyQt5ymuThTCjutMYyQJP2b_ODWsIzKrs1RyzN/s1600/20150412_175918.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrKe0Hh0s2EGnlVQY4p5GPzVEtvdJzK76bkC90CE6DhhExN8l4EdiV4ZMQOn6T1VzvqAE_qZf1GDxuJDbDaL5PZXp6x9hSZIq1fGI0BBpyQt5ymuThTCjutMYyQJP2b_ODWsIzKrs1RyzN/s320/20150412_175918.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small; text-align: start;"> Jack riding in his cozy coupe spring 2015</span></td></tr>
</tbody></table>
<br />
<br />
.<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRKU6aG1pwBayjoqHdbpYGAnhcVb8mx-gJJcb-bk4rhMvjJR6r3prbeW34veC5qx9rhyy0YT1GqkwRHL61Fs4DI0TO-C1pTAzzY0n3bwhclht5KolefGRW_hc4iFglYHFl5K2QOBbZSiax/s1600/20150314_105715.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRKU6aG1pwBayjoqHdbpYGAnhcVb8mx-gJJcb-bk4rhMvjJR6r3prbeW34veC5qx9rhyy0YT1GqkwRHL61Fs4DI0TO-C1pTAzzY0n3bwhclht5KolefGRW_hc4iFglYHFl5K2QOBbZSiax/s320/20150314_105715.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Julianna at her ice skating competition spring 2015</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSSfDNnsm6tzkli9SOfLGmdMd_0gAequZv2k_ASrGF-l1weVW80dA1jPEnwo-dCSvJ4SljZXbPrj_lNq5HU4zdK3qgF6BRzg3woZb13JlIS7I9vsZ9Y1gQvNdDzj3ION0JYyl-smdez4Co/s1600/jackhaircutmerge.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="284" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSSfDNnsm6tzkli9SOfLGmdMd_0gAequZv2k_ASrGF-l1weVW80dA1jPEnwo-dCSvJ4SljZXbPrj_lNq5HU4zdK3qgF6BRzg3woZb13JlIS7I9vsZ9Y1gQvNdDzj3ION0JYyl-smdez4Co/s320/jackhaircutmerge.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack getting his first haircut. Late summer 2015,</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVibNYejU_X1Z8iSzuXVCEdDziYSeKQkDjMmcZW73eoTEwOSttshkNVKYpx5TNIzjcrHF2acp9Rr9a94QiEo45lTm12OhRkLJWWRtYv2SfHPO0j7eJ6YVEet1oTOblk5o8gPG2x7LcjqaE/s1600/cousins2015.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVibNYejU_X1Z8iSzuXVCEdDziYSeKQkDjMmcZW73eoTEwOSttshkNVKYpx5TNIzjcrHF2acp9Rr9a94QiEo45lTm12OhRkLJWWRtYv2SfHPO0j7eJ6YVEet1oTOblk5o8gPG2x7LcjqaE/s320/cousins2015.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small; text-align: start;"> Cousins at the lake house July 2015</span></td></tr>
</tbody></table>
MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com0tag:blogger.com,1999:blog-1662996835934184290.post-30975663868338792012015-09-09T23:07:00.003-04:002015-09-09T23:07:47.696-04:00Long Time, No PostI haven't been writing on here lately but I decided to update.<br />
<br />
First, on a sad note, we lost my Dad on January 2, 2015. He fought a long fight with Alzheimer's Disease. He will be greatly missed but I am happy that is suffering is over. I also think my Mom waited a long time for him and now they are together again.<br />
<br />
Jack has been working hard with all his therapy. He got his second cochlear implant back and is making progress but it is very slow. He is walking, running and climbing. He is still way behind but I see him moving foward so I remain very hopeful despite his negative evaluations. He is happy and charms everyone. He is really not talking yet but he has a few words. He constatly babbles and reminds me of Latka from Taxi with his own little language.<br />
<br />
Julianna is also thriving. She did all kids of things this summer, She waterskied, did trapeze, surfed in the ocean, swam and had all types of fun.<br />
<br />
I have a lot of meetings for Jack as he begins the transition from Early Intervention to pre-school. The funding comes from different sources so it is a big deal to switch over. Early Intervention usually gives more services but my insurance is billed for them. When the school district takes over they do not bill the insurance.<br />
<br />
Jack has been going to the Deaf Infant Program. They have been really great for him. The teachers are certified in deaf education as well as speech therapy. He gets two on one therapy as well as classes with other children who have cochlear implants. Some of the kids have amazing speech and you would never know they are deaf. Jack is not even close to that level. They say his hearing age is 9 months because that is when his left implant was activated. His speech and language are at about that level. I know he understands what I am saying most of the time.<br />
<br />
Jack will only be able to stay in the Deaf Infant Program until December 31 of this year. He turns 3 at the end of November and the rule is that they can only stay in the program until December 21 of the year that they turn 3. They do not adjust for prematurity.<br />
<br />
I went to see one of the schools for the deaf that is in my county. It is a pretty far drive and Jack would be on the bus for over an hour each way if he goes there. I was not happy with the school. It was very much like an institution. They were very Deaf culture and the whole campus was signing. They did have an auditory verbal class for kids with cochlear implants but they were still very much exposed to sign. There was also a kindergarten class with 10 kids. They were all bilaterally implanted with cochlear implants but they were all signing. When I asked why this was I was told that they had all failed the oral program for one reason or another. That upset me and I really don't want Jack to go there, I am hoping he will make a lot of progress in the next few months so I have more options.<br />
<br />
Tomorrow I have a big meeting with the school district to decide what type of services Jack will get when he finishes with Early Intervention. I am hoping it goes well. We shall see......MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com0tag:blogger.com,1999:blog-1662996835934184290.post-46562005979720632492014-09-11T22:24:00.001-04:002014-09-11T22:24:33.522-04:00Cochlear Implant Working Again<br />
<br />
We had an appointment with the audiologist today. She was able to trouble shoot Jack's equipment and get him hearing again. The microphone was not working properly. I had called Advanced Bionics numerous times and they sent me a new microphone and a new processor but I could not get it to work. The audiologist reprogrammed the processor. She also had to turn the program down in volume when we used the new microphone. The new microphone with the old program was causing Jack to cry and blink his eyes. It was much too loud. We are going to have to turn it up slowly again.<br />
<br />
I met with his speech pathologist at the school after his audiology appointment. I showed her everything we are doing. I also showed his teacher how to put it back on him if it comes off (happens all the time) and how to turn it off and remove it before he gets on the bus. He can't wear it on the bus because the microphone is a choking hazard.<br />
<br />
Jack started his physical therapy (at home) yesterday. It went ok, but he was very tired since it kept him from his early nap. It is hard to fit all the therapies, school and the naps in. He is not a happy boy when he misses his nap. Jack is a great sleeper. He goes to bed at about 6:30 and sleeps until 7:00. He usually takes a nap around 10:00.<br />
<br />
I am retired now but I am busier than ever. I am hoping things settle down a bit once we get used to the new fall schedule.MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com0tag:blogger.com,1999:blog-1662996835934184290.post-51358081163846244302014-09-05T10:13:00.001-04:002014-09-05T10:20:17.704-04:00School Started!<br />
<br />
We enjoyed the last few weeks of summer. We were up in Pennsylvania for the weekend and had a nice time. There was one strange event. Jack's left ear, the one where he lost the implant, often bothers him. The incision behind his ear has a raised red spot. It has since he had the surgery to remove the implant. He has been seen by numerous doctors, and no one thought it was infected, it is just raised in one spot and redder there. He was rubbing the spot and I looked at it and saw something hanging out of it. I touched it and it came out completely. There was no resistance, There was also no blood, pus or any other fluid. It was his electrode. The doctor has said he would leave it in as a "place holder" but it came out on its own.<br />
<br />
I emailed the doctor. He said it happens sometimes. It was not anchored to the implant since that was removed and it worked its way out. He said I should just put bacitracin on the spot. He also said we should schedule Jack's re-implantation soon since he no longer has the electrode in the cochlear. He didn't think it was a big deal, but I must admit it was pretty creepy. It is about three inches long. Super weird to have it just come out of his head like that. It did not seem to bother him at all though.<br />
<br />
Both Jack and Julianna had their first day at school. Julianna started first grade on Tuesday and Jack started the Hagedorn Little Village School yesterday.<br />
<br />
Julianna was a little sad that some of her friends are not in her class this year but she seemed excited to meet some new kids. Her teacher is only going to be her teacher for this week and then will be leaving on maternity leave. She will have a permanent substitute for the rest of the year. I am hoping it will be the same person all year. They are all still pretty little and need some consistency.<br />
<br />
I took Jack to school yesterday. He has a very small back pack and he looked super cute with his little name tag. He can walk a few steps but I had to carry him. He went straight to the toys. His teacher seemed very nice. He is going to have eight kids in his class but they were not all there yesterday. The vast majority of the kids in his class are former preemies. I think Jack might have been born the latest at 26 weeks. He has a 23 weeker (with a twin in the other class), a 24 weeker and two 25 weekers. They all have different issues. The class is focusing on developmental delays (physical) but it is going to have a primary focus on language. Jack is the only deaf child in the class.<br />
<br />
I spoke to Jack's speech therapist. She will be assisting him two times a week at school and one time a week at home. I asked her what her thoughts on teaching Jack sign language are. She said it should be avoided and we need to concentrate on the auditory verbal approach. Every speech pathologist and teacher of the deaf we have worked with has told me this. They feel he needs to hear and listen first. He can learn to sign at some point but it should not be first. I that they all have a tremendous amount of experience and they base their opinions on the current research. My problem is that so many of my family and friends disagree with this. They go on and on about how this is wrong and I am not doing the right thing for Jack. They all talk about how they did baby sign with their kids and it was the greatest thing ever. I agree. I did sign with Julianna. However, it is very different when the child is deaf and has cochlear implants. It is a very specific type of learning.<br />
<br />
Jack is getting the bus home from school. I would pick him up but he and Julianna have the same dismissal time. They get out of school at 3:30. Jack's bus did not arrive at our house until after 5 pm. I also saw they they did not seem to have a proper car seat for Jack. They have the integrated restraint system which is like a built in booster seat. It has a 5 point restraint, but it has him just sitting on a pad on a regular bus seat. I looked it up and it does not seem to meet the NY state law for child restraint systems in buses. I an going to talk to the bus coordinator at the school today. I would prefer to drive him home because I don't think 90 minutes on a bus is good for him and I don't think it is safe. I am hoping to find some type of solution.<br />
<br />
Jack woke up three times last night. He was screaming his head off. He would not let me cuddle him and was throwing himself down like how a child would during a tantrum. He has never done anything like this before. He did not have a temperature and did not seem like anything was hurting him. He would not relax to sleep with me. I just don't know why it happened. Finally, Smudge decided to sleep next to Jack's crib. After awhile Jack feel asleep looking at Smudge.<br />
<br />
I do not know what upset Jack so much. . His teacher said he had a great first day and was very happy. It brings me back to the bus. Maybe because it was so long it upset him. Maybe they weren't nice to him. I just don't know. Of course the whole night terror thing could be a coincidence, but it seems unlikely.<br />
<br />
We are going to try it all again today and see how it goes. I am hoping he has a good day and a good night.<br />
<br />
<br />
<br />
<br />MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com3tag:blogger.com,1999:blog-1662996835934184290.post-1495902787243490352014-08-29T06:47:00.002-04:002014-09-05T10:21:24.066-04:00Jack is Walking!!!<br />
Little man Jack has started to walk. It is very exciting, especially since I had been told be the neurologist that it was unlikely he would ever roll over. He can do about 10 steps in a row and he does often drop down to crawl because it is faster. I am thrilled and so is his biggest cheerleader Julianna.<br />
<br />
I have retired from my job. I am pretty happy about the decision. I will now have time to spend with the kids and a lot of time to devote to Jack's care. There are so many possibilities and it should be great.I am hoping he<br />
<br />
Jack is going to be starting the Hagedorn Little Village School on September 4th. The school is for children with special needs. Jack will be going in the afternoons and his class is predominately for language. I went to the parent orientation last night. The program is for two year olds. Jack is 21 months old. He is allowed in the program because the age cutoff for school in this area is December 1st. Jack's birthday is November 28th. So he will be the youngest child in the program. He won't be adjusted two (when he was supposed to be born) until March. I am hoping he will be able to do it. He has been going to daycare so he is used to a routine, but this is a lot more academic.<br />
<br />
Early Intervention is supposed to provide a bus for Jack. I am going to drive him there, but they are going to provide a bus to bring him home since Julianna and Jack are getting dismissed from school at the same time. Julianna's school is very close to our house and Jack's school is less than 10 minutes away in Seaford, NY. I was contacted by the bus driver who told me that Jack might be on the bus for an hour and a half. I am freaking about this a bit. They are planning to drive him all over the county with the other kids before they drop him off. There will be a matron on the bus but I am worried about that length of time each day. I am trying to figure out how I can arrange to pick him up and still get home to get Julianna.<br />
<br />
We have had a nice summer. We managed to get up to Pennsylvania a bunch of times. We had a lot of family and friends visiting. There will be a few more summer days to enjoy before we get back to the daily grind that fall will bring.<br />
<br />
<br />
<br />
<br />
<br />
<br />MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com1tag:blogger.com,1999:blog-1662996835934184290.post-74390123160151433622014-08-04T14:43:00.001-04:002014-09-05T10:22:27.646-04:00Updates<br />
I haven't written on here in so long. Sorry about that, life has been crazy busy.<br />
<br />
I decided to wait awhile before having Jack get a new implant to replace the one he lost. He was having so many problems with his lungs that I felt I was really taking too much of a chance. He will probably have the surgery some time in the fall. In his last surgery his oxygen saturation dropped to 72%. It took them awhile to get it back up and it was really scary for everyone involved.<br />
<br />
Jack had his ear tubes replaced a week ago. I was nervous about the anesthesia but they assured me that it was only mask anesthesia. He did not need to be intubated. His oxygen saturation did drop but only into the high 80's. They were able to get it up rapidly with blow by oxygen.<br />
<br />
We have been having some issues with the equipment for Jack's cochlear implant. There have been problems with the external microphone and the processor. I have not been thrilled with the customer service from Advanced Bionics. I am waiting to get into the audiologist so we can troubleshoot everything. It is tough when there is a problem in the summer since there are so many people on vacation. In the meantime we have been teaching Jack some sign language. There are a lot of people against teaching any sign language to small children with cochlear implants, but I feel I need to go with my gut and make sure he has some communication skills.<br />
<br />
Jack is still not walking. He can take some steps when I hold his hands. His physical therapy assessment puts him at the 9 month level and below the first percentile. He is now 20 months old, 16 adjusted. It is disheartening to read the assessments from each of the therapists. He is happy and I feel he is progressing, just very slowly. I can comfort myself by realizing that he has far surpassed what a number of doctors predicted for him. I was told he will never walk and would likely never roll over. He crawls with great speed. He is climbing. He pulls himself up. He does have a right side foot drop. We are not sure why. He might have had a stroke while he was being ventilated and he might have some cerebral palsy. In order to find out for sure he would need an MRI. If he has that they would have to remove the magnet from his cochlear implant. They can do that through his scalp, but I have decided to wait and see what happens. I realize that having a diagnosis won't change anything and the treatment will be pretty much the same no matter what is causing it. He has physical therapy twice a week. He also has a teacher for the deaf twice a week and speech therapy three times a week. I am hoping we can add some occupational therapy. Meanwhile we clap and cheer anytime he does something new. Julianna is his biggest fan. She cheers anytime he does anything and he laughs and smiles every time. I enjoy watching them together. It makes me realize how worthwhile this whole journey is.<br />
<br />
I had Jack tested to see if he could go to a preschool near us for kids with special needs. He was accepted and will go in the afternoons. They will have a lot of therapy for him as well as speech therapists and audiologists on staff. I think it is such a great opportunity for him. The same school is also starting a preschool program for deaf children and he will be eligible to go there next fall for a full day program.<br />
<br />
I am planning to retire soon so I can spend more time with Julianna and Jack. I want to do more things with them and working full time has made that impossible. I would also like to take Jack to water therapy and a Mommy and Me class so he can make more progress. Julianna is thrilled with the idea and she can't wait for me to be home with her more often.<br />
<br />
We are having a good time and enjoying summer. We were lucky enough to have my sister Kate and her family at the lake. The cousins had a ball together. I will post pictures soon.<br />
<br />
I will try not to wait so long to update again!<br />
<br />
<br />
<br />
<br />MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com0tag:blogger.com,1999:blog-1662996835934184290.post-7658914589260244362014-03-22T08:37:00.000-04:002014-03-22T08:45:16.073-04:00Pictures<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Here are some pictures of our family.</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNl_itmwNmLXN-o0QTj74yI4C6SNhos5peJhTcYdU7GLff-5w_d_uA1wmnkG4Ak5yQDW_kmpNxsYt2z8xBbe1UCxkKK76dOoIVmWhhkJ9LGyQSDr7a_4X5nkhHp4Rm9Hg4jo17N_kSbvg2/s1600/2014Valentinesdayg.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNl_itmwNmLXN-o0QTj74yI4C6SNhos5peJhTcYdU7GLff-5w_d_uA1wmnkG4Ak5yQDW_kmpNxsYt2z8xBbe1UCxkKK76dOoIVmWhhkJ9LGyQSDr7a_4X5nkhHp4Rm9Hg4jo17N_kSbvg2/s320/2014Valentinesdayg.jpg" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Julianna and Jack Valentine's Day</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCrAHkQn122gVvFrIl8lus3unilfeU4zFC0vbj9I-n-6UM0xsz_AoTq-dSCHDjXAbxf7NLyO7OYRvgNdZFZ1l1HonYyTB4qCJZGlQbLoebz9Zuzu_qgCNxYRjFv2xrRGi3demVg8o3AWay/s1600/2014Valentinesdaym.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCrAHkQn122gVvFrIl8lus3unilfeU4zFC0vbj9I-n-6UM0xsz_AoTq-dSCHDjXAbxf7NLyO7OYRvgNdZFZ1l1HonYyTB4qCJZGlQbLoebz9Zuzu_qgCNxYRjFv2xrRGi3demVg8o3AWay/s320/2014Valentinesdaym.jpg" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Valentine's Day</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuVgg9kf52QYLzJt_ZWohOJowTTPJ1ICALP52S-6l6mkuJve06JXhBLuc5blzD8hsU8aOIVRWXbROQrif1SFvZQ3zcHmmlErcMDcr7Zfyhyphenhyphenf3ffpR5dlwHeYA8RA7OR7FXZ6p2s25JxMAj/s1600/JackMarch2014a.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuVgg9kf52QYLzJt_ZWohOJowTTPJ1ICALP52S-6l6mkuJve06JXhBLuc5blzD8hsU8aOIVRWXbROQrif1SFvZQ3zcHmmlErcMDcr7Zfyhyphenhyphenf3ffpR5dlwHeYA8RA7OR7FXZ6p2s25JxMAj/s320/JackMarch2014a.jpg" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Jack - March 2014</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhESmUPzHO09VEu95n2m3FARClhIryNQFNEPvqxsQaTEeZDSkO0vTrgLhC307q6X_o1p3PDIIIpDytIdL9RjxC9HUol6BpPyrT-a3jtdJLSTra5OkCStcUphAEz9ArtfGnxbv2L_NnX8SeZ/s1600/JuliannaJackMarch2014f.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhESmUPzHO09VEu95n2m3FARClhIryNQFNEPvqxsQaTEeZDSkO0vTrgLhC307q6X_o1p3PDIIIpDytIdL9RjxC9HUol6BpPyrT-a3jtdJLSTra5OkCStcUphAEz9ArtfGnxbv2L_NnX8SeZ/s320/JuliannaJackMarch2014f.jpg" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Julianna and Jack March 2014</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmKdgDpKbSJvbnx0npqJGM41-r3OjFlY_UsSKBA1WqI8UfsOLRpiCzCFMBmaY3qPc1UZ9TYN7zDLenZFjyTJBPINPH9nEIH5LnenNo5suFn0NodvwSgROohwZiJKLUegRrL1KW4JY_OFr3/s1600/JuliannaJackMomStPats2014e.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmKdgDpKbSJvbnx0npqJGM41-r3OjFlY_UsSKBA1WqI8UfsOLRpiCzCFMBmaY3qPc1UZ9TYN7zDLenZFjyTJBPINPH9nEIH5LnenNo5suFn0NodvwSgROohwZiJKLUegRrL1KW4JY_OFr3/s320/JuliannaJackMomStPats2014e.jpg" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
St. Patrick's Day 2014</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx5RmGkcfX9Hd4l27MAF4DsDOsMc7aW4f68ydhjK0zCYHz4TW5b_i5EBd5KJSTRtVInXih30Hq1wufRSq9PnIHzAQaDGJvMGpV6S6so2Vr9LpUcrF1egg4rT3SJgKhNHuqrAt2NxH2b1H-/s1600/JuliannaJackStPats2014.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx5RmGkcfX9Hd4l27MAF4DsDOsMc7aW4f68ydhjK0zCYHz4TW5b_i5EBd5KJSTRtVInXih30Hq1wufRSq9PnIHzAQaDGJvMGpV6S6so2Vr9LpUcrF1egg4rT3SJgKhNHuqrAt2NxH2b1H-/s320/JuliannaJackStPats2014.jpg" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Julianna and Jack - St. Patrick's Day 2014</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip8wCd63J2cLGYorNfZOXW7boU4Um0gV5n0PSwUFaoJ7ERFnvZZv7u4d6j9dFvQqeUN13csKvzbK4ped-gqoCHzR4tf3ftliObQEvc97MObzMJP9quz_7y0TKUQiZ1JbqYY_S6Li8dWg2d/s1600/Julianna6thbdayg.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip8wCd63J2cLGYorNfZOXW7boU4Um0gV5n0PSwUFaoJ7ERFnvZZv7u4d6j9dFvQqeUN13csKvzbK4ped-gqoCHzR4tf3ftliObQEvc97MObzMJP9quz_7y0TKUQiZ1JbqYY_S6Li8dWg2d/s320/Julianna6thbdayg.jpg" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Julianna turns 6</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeb9ynqXk3O5OVqKlOr8D08WFxzLLNBNyil7Ap2an-zBgX-rPRxF5GTytExBlcaI53cY5e36hlZztpjFG-WNgM6DT7GEs5bLWQTJ0d7CNbPjnjaR0q7W_ZD5tFFg4zWtbGqykAmY6Ot07P/s1600/Julianna6thbdayo.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeb9ynqXk3O5OVqKlOr8D08WFxzLLNBNyil7Ap2an-zBgX-rPRxF5GTytExBlcaI53cY5e36hlZztpjFG-WNgM6DT7GEs5bLWQTJ0d7CNbPjnjaR0q7W_ZD5tFFg4zWtbGqykAmY6Ot07P/s320/Julianna6thbdayo.jpg" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Happy 6th Birthday Julianna</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0-D65sAvtXTIbnInK99LtJXDC5EsnecYrrFXKo_GvQQSIe59wTj_2H8Sf7l2rjpSEqlM3BI8BT1QR-T9nkBLJUd4sYNLJK-E8SrupGOT7l6CMXupFLz1-jL9pxTd8tYs_-bHDWbgY_q5g/s1600/photo+(30).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0-D65sAvtXTIbnInK99LtJXDC5EsnecYrrFXKo_GvQQSIe59wTj_2H8Sf7l2rjpSEqlM3BI8BT1QR-T9nkBLJUd4sYNLJK-E8SrupGOT7l6CMXupFLz1-jL9pxTd8tYs_-bHDWbgY_q5g/s320/photo+(30).JPG" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
This is how Jack's ear looked right before he lost the implant. It went from normal to this in less than 48 hours.</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhakcJ_vLZSH2TNpwf8RqJDdW28xs2uj6fiGw19TgT4lq9TCNeDylOW5IudylONdX8OBXTpvduA5tqF8nUAmkQJhKZ1p-vzLfs-1pLto2UUJvioS5jivmpDRk9nWZYNWbOz5dy4uAiZD1Qf/s1600/photo+(31).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhakcJ_vLZSH2TNpwf8RqJDdW28xs2uj6fiGw19TgT4lq9TCNeDylOW5IudylONdX8OBXTpvduA5tqF8nUAmkQJhKZ1p-vzLfs-1pLto2UUJvioS5jivmpDRk9nWZYNWbOz5dy4uAiZD1Qf/s320/photo+(31).JPG" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
This is how swollen the whole implant was looking.</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS0rmERDqs6NQGqBQD1451L4lqNwS545izTZAZY1r4E6Smz-S_wFBN2Nlf5uMBIKifT99L0qxkdzju1pzIF1qfUx9Cf4FXR6OknLmXE71Hsx6zP__mKR8fl_vZo8u9dvGHBjgyP6CJPYJu/s1600/photo+(32).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS0rmERDqs6NQGqBQD1451L4lqNwS545izTZAZY1r4E6Smz-S_wFBN2Nlf5uMBIKifT99L0qxkdzju1pzIF1qfUx9Cf4FXR6OknLmXE71Hsx6zP__mKR8fl_vZo8u9dvGHBjgyP6CJPYJu/s320/photo+(32).JPG" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Jack's ear. Just before the implant came out.</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRZyOHPluvzrnYt2ijzpaR6Ik50AToY5_01nkd7Jbja2YtX6SS9IVtNEdd93cYWknLt9yri91N5h-dmu6l87mu7lgSIhbYj3kUrS26-r2xtcgnsSVdSQKSjNXCXevniom17s04OEjJLbPd/s1600/photo+(33).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRZyOHPluvzrnYt2ijzpaR6Ik50AToY5_01nkd7Jbja2YtX6SS9IVtNEdd93cYWknLt9yri91N5h-dmu6l87mu7lgSIhbYj3kUrS26-r2xtcgnsSVdSQKSjNXCXevniom17s04OEjJLbPd/s320/photo+(33).JPG" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Julianna lost her first tooth.</div>
MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com1tag:blogger.com,1999:blog-1662996835934184290.post-33683496720381083162014-03-19T05:39:00.001-04:002014-09-05T10:24:53.624-04:00SetbacksOne of Jack's cochlear implants had to be removed. I have heard this phrase many times, "well, it is a very rare complication but......."<br />
I noticed that Jack's left cochlear implant was looking a little more prominent. I was attributing it to his plagiocephaly (abnormally shaped head) but I was watching it. All of a sudden it was looking very swollen. I called NYU a number of times and they kept saying that they would get back to me. They never did. Then the incision line starting looking extremely infected. I took pictures of it all and emailed it to the nurse practitioner and the surgeon. The nurse practitioner emailed me back and said they should be able to see Jack in a few days.
<br />
I knew it was pretty bad and I was pretty worried that Jack was going to get septic or meningitis. He did not have a fever and he was acting fine but I was getting frustrated and made an appointment with my pediatrician so he could at least get antibiotics. Finally the surgeon called me back. He had seen the pictures and he said to get Jack into NYU and he would get him on IV antibiotics and operate in him to clean the infection out. He hadn't seen the email because he was getting ready for three surgeries that morning.<br />
My friend Cathy said she would take care of Julianna and we went into NYU. They are pretty efficient there. They got him on the antibiotic pretty quickly. Dr. Roland came to see Jack in between his surgical cases. Jack went into the operating room at about 5:30 pm after Dr. Roland did three cochlear implant surgeries.<br />
He came out to see me after the surgery and said he was unable to save the implant. He said it was very rare for it to get infected over two months after the surgery but it does happen sometimes. He said we can so another implant in about three months. The cultured the infection and it was a staph infection.<br />
Jack had great difficulty during the surgery. His oxygen saturation went down to 72. They stopped everything, gave him breathing treatments and were able to get his breathing back to normal. His poor lungs have taken such a beating. <br />
We stayed at NYU overnight and came home the next day. We saw Dr, Roland the next week and then the week after when he removed the stitches. We scheduled his next surgery for May.<br />
It is pretty frustrating having setbacks. I sometimes feel like Jack can't catch a break. He is a happy guy though. He was clapping hands on his way into the operating room and was laughing and happy pretty quickly after his surgery.MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com0tag:blogger.com,1999:blog-1662996835934184290.post-12851238075037606772014-01-22T19:52:00.001-05:002014-09-05T10:26:35.332-04:00Jack Had RSV, Pretty ScaryI picked Jack up at daycare on Thursday and his teacher said he was very tired and didn't want his bottle. I took one look at him and realized it was because his breathing was so bad. I gave him two treatments and my friend Maddy drove to the hospital with me, Julianna and Jack in the back. She dropped me and Jack off and was kind enough to keep Julianna overnight for me.<br />
<br />
Jack's O2 saturation was 88 but quickly dropped to the low 80's. They gave him 5 treatments back to back, IV steroids and admitted him. He still had nasal flaring and retractions and his wheezing was really bad. They were pretty worried because he did not seem to be responding to treatment but he finally started to. He had breathing treatments every three hours for a little over two days. They cultured him and he was positive for RSV.<br />
<br />
On the third day when the pulmonology fellow saw him she said there was no way he could be discharged. When I saw Jack's pulmonologist she said she would discharge him provided I slept next to him (I do anyway to hear his breathing, not in same bed), gave him treatments every four hours, gave him the oral steroids, take him back to pediatrician and pulmonologist and come back to the ER at the slightest sign of any problem. Of course I have no problem with those things.<br />
<b>What is RSV and why is it such a big deal in preemies?
</b><br />
RSV 101: What Every NICU Parent Needs to Know
For most infants, respiratory syncytial (sin-SISH-uhl) virus (RSV) causes an illness like a common cold in the upper and lower respiratory tracts. But some babies, including those born preterm and those with special health care needs, may be at high risk for a severe infection which can cause pneumonia or bronchiolitis, inflammation of the small airways in the lung. These conditions can lead to serious complications, re-hospitalization and in some cases, death. According to the Institute of Allergy and Infectious Diseases, 75,000 to 125,000 children in the United States are admitted to the hospital for RSV infections each year. Fortunately, education about the virus and prevention steps can help you reduce your child’s risk.<br />
Is Your Baby or Young Child at Risk?<br />
A preemie may appear healthy, yet still have injured lungs. Chronic Lung Disease (CLD) is the result of a baby’s lungs getting irritated or inflamed. Babies may need a machine called a ventilator to help them breathe. Pressure from a ventilator can sometimes irritate the fragile lungs of these babies, which can cause CLD. CLD may also develop in babies who have received high levels of oxygen for a long time or have had pneumonia. Because their lungs are not normal and may still be healing, babies with CLD are at increased risk for severe RSV disease.<br />
How Early Was Your Preemie? <br />
If your baby was born at 28 weeks or earlier…Your baby may not have received all the virus-fighting substances, called antibodies, from mom. Also, babies born at 28 weeks may have small, underdeveloped, and narrow airways for breathing. This puts them at high risk for severe RSV disease. <br />
If your baby was born at 29-31 weeks…A bad lung infection can cause clogged airways and serious breathing problems that might lead to hospitalization. <br />
If your baby was born at 32-35 weeks…and is 6 months or younger at the start of RSV season, he or she is considered to be at high risk for severe RSV disease. <br />
If your baby was born at 36 weeks or later…Most full-term babies get a mild form of RSV disease.
Symptoms and Diagnosis<br />
An RSV infection usually causes moderate-to-severe cold symptoms in the upper and/or lower respiratory tract. In young infants, the symptoms may be less obvious. According to the American Lung Association, “In very young infants, the only symptoms may be irritability, decreased activity, and breathing difficulties.”<br />
Coughing, sneezing or wheezing that does not stop
Stuffy or runny nose
Fast breathing or gasping for breath
Spread-out nostrils and/or a caved-in chest when trying to breathe
A bluish color around the mouth or fingernails
A fever (in infants under 3 months of age, a fever greater than 100.4°F rectal is a cause for concern)
Mild sore throat
Lower appetite
Trouble sleeping
For diagnosis, your baby’s physician may test a nasal swab for evidence of the virus. A chest X-ray and/or oxygen saturation test may also be done to check for lung congestion.<br />
Treatment
As with many viruses, once the diagnosis is confirmed treatment is limited to managing symptoms. Less severe cases may receive medicine to reduce fever or medicine delivered via a nebulizer, which converts medicine to an easily-inhaled mist to assist the lungs during an infection. Fluids are often recommended especially for young children and infants to prevent dehydration. A bulb syringe can be used to suction mucus from nasal airways in infants.
If your child has severe form of RSV, he or she may need to be hospitalized and treated with oxygen, have mucus suctioned from the airways or be placed on a ventilator to assist with breathing. Often hospitalization lasts a few days with most children recovering within one to two weeks. <br />
Prevention
RSV spreads just like a common-cold virus. According to the CDC, “people infected with RSV are usually contagious for 3 to 8 days. However, some infants and people with weakened immune systems can be contagious for as long as 4 weeks.” Because contracting RSV does not give protection from future infections, your child can get RSV multiple times—even during a single season. The first infection is usually the most severe with subsequent infections generally having milder symptoms. Taking a few extra precautions around your family and friends can help protect your baby and young child during RSV season.<br />
Wash your hands thoroughly before touching your baby, and ask others to do the same.
Cover your coughs or sneezes and show siblings how to practice good hygiene.
Don’t let anyone smoke in your home or near your baby or child.
Wash your baby’s toys, clothes and bedding often.
Don’t share eating utensils and cups with one another.
Consider regularly disinfecting high-traffic hard surfaces such as door knobs.
Keep your baby away or limit exposure to crowds, young children and anyone with colds.
Talk to your pediatrician about palivizumab (Synagis®) shots during RSV season.
Preventative Injections
Palivizumab (Synagis®) is the only FDA-approved medication to help protect high-risk babies from severe RSV disease. Even though it is given as a shot by your healthcare provider, it’s not a vaccine because it works differently. Each shot, which is given monthly during RSV season, provides a dose of virus-fighting substances called antibodies that help prevent severe RSV disease from infecting your baby’s lungs.<br />
“RSV is one viral illness that actually can be prevented with adequate prophylaxis,” said Dr. Sarmistha B. Hauger, Director, Pediatric Infectious Disease, ‘Specially For Children, Dell Children’s Medical Center. “Babies who fit into the high risk criteria and are born at the time that RSV may be circulating in a community should be identified quickly, and begun on a regimen of monthly injections of palivizumab (Synagis®). This antibody is extremely effectiveat preventing serious illness secondary to RSV,” she said.<br />
Preemies are often born before getting enough antibodies from their mothers to help fight RSV and other viruses. Preemies are also at greater risk for severe RSV disease because their lungs are less developed and their airways are narrower than those of full-term babies. Synagis® helps preemies by providing more infection-fighting antibodies to help protect their vulnerable lungs from RSV. The shots are effective for about a month, which why it′s important to get every single shot on schedule during RSV season.<br />
Jack was approved for the Synagis vaccine and he does get it. He did not get it in December due to complications from his cochlear implant surgery. He did get the shot right before we left the hospital. <br />
He is a sweet little guy and all the nurses loved his little smile. He has been doing a lot better the last few days. The pediatrician was happy about how he sounded but he still needs multiple breathing treatments each day and he is still on the oral and inhaled steroids. It seems like it is always crazy around here. <br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGpg7FF72_YtF7SZtQSCT6ImHPii46J0uKP4PYOxux7IutG4Sz_HHB2Tkg5M9XyacSONea663gq3wfHUfXC7c9B4V-me-bGLQ_hUveM-3oFY4hxanM3oqoSC0G4qYk6Ay6TbSTd3h2edAu/s1600/photo+(22).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGpg7FF72_YtF7SZtQSCT6ImHPii46J0uKP4PYOxux7IutG4Sz_HHB2Tkg5M9XyacSONea663gq3wfHUfXC7c9B4V-me-bGLQ_hUveM-3oFY4hxanM3oqoSC0G4qYk6Ay6TbSTd3h2edAu/s320/photo+(22).JPG" /></a></div>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com1tag:blogger.com,1999:blog-1662996835934184290.post-70033682830442273402014-01-03T21:46:00.000-05:002014-09-05T10:28:14.035-04:00Jack's Cochlear Implants Are Activated!It was a tough few weeks after the surgery. Jack had projectile vomiting, heavy bleeding from both ears and pretty serious balance issues. They said the vomiting and the balance issues are from the trauma to the middle ear. The bleeding seemed much heavier than it would be for the average cochlear implant patient because Jack has ear tubes so blood and fluid were readily able to drain out.<br />
He still has slight balance issues but it has gotten much better. He can sit again now and he is not falling over anymore. I am pretty happy about that because we had so much therapy to get him to be able to sit so I was worried that we had lost it all, but he is getting it back again.<br />
We set off for NYU for the activation with a pretty big blizzard on its way. I called to try to change the appointment but I would have had to wait 6 weeks and I didn't want to do that. We were supposed to have an appointment on Thursday and then another on Friday. They said they could squeeze it all in so that we could skip the Friday appointment.<br />
We took the train in and they saw us pretty quickly. They showed me how to work the equipment. There is a lot to know. They showed me how to test it, assemble it, put it into the dehumidifier unit each night, change the volume, change the program set up, put it on his head, clip it on or use the harness, etc, etc. Finally we put it all on him and he responded to sound. I videotaped it but they told me I was not allowed to post it publicly. <br />
They made all different kinds of noises to measure his responses. I think it was a bit overwhelming for him. Really I just wanted to say "hi Jack!! Mommy loves you!!!". I know he wouldn't understand it but I would have liked it to be just us. <br />
They had two giant boxes of equipment for me and a big bag. I took the train and had the stroller. We packed what we could into the stroller and I left the rest for out next appointment which is on Friday January 10th. She packed up the processors for me to put in my backpack and then told me to be careful of them because they are worth over $20,000. And to think I was worried about someone stealing my ipad in the train station!<br />
I walked back to the Penn Station and made it home before the blizzard started. Both Jack and I were tired and we all went to bed pretty early.<br />
Julianna had no school today due to the snow. I put the processors on Jack and was able to talk to him here in our house with no one else. It was great. I videotaped a very short amount of it. <br />
I have been told that, if hearing is a computer, Jack now has the hardware. The therapy he will receive over the next 3 - 5 years will give him the software. He really has to learn to hear with the implants. Right now he is being assaulted by the sound a bit. We all learn to tune out extraneous sound. For instance, we don't hear lights buzzing or routine traffic noise because we have learned to tune it out. We do that from birth. Jack has not learned how to do that because he hasn't heard since shortly after birth. So he has to learn how to tune out noise and how to make meaning from the sound. Also, Jack is hearing electronically and that is not how we normally hear. Most of the kids who get cochlear implants as early as Jack did do very well. They tend to be mainstreamed and attend regular school as early as kindergarten. I don't plan to tell Jack that he has any type of disability, just that he might have to work a little harder than most kids, so I am hoping he will excel. He is also going to have a lot of therapy to help him along.<br />
Thanks for all the help and prayers!!!
Here is Jack hearing! It is short but sweet!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzfwULDXUWHH2SA1pea6fOMgKi7z9OdEE02RlWLPZ21pVrh4689-RqBpKcbOJCDkIvUUFlf2sfNlndQLbeN' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com1tag:blogger.com,1999:blog-1662996835934184290.post-48799166969100242262013-12-17T11:48:00.000-05:002014-09-05T10:33:01.184-04:00Some Bumps In Jack's RoadJack has started to feel a bit better and the bleeding from his ears has almost stopped. I did notice another problem though. His balance is completely off. He has been falling over to his left side. I had him sitting on the floor. He is really good at sitting unassisted, or at least he was. He can't even get enough balance to sit for a few seconds. He just tilts to the left and goes over. I had him in the bath ring, couldn't do it. In the exersaucer he sat in the seat bit had to hold on to an attached toy to keep from falling over.<br />
I looked it up and it says that balance can be affected by the cochlear implant surgery, especially if both sides are implanted at once. I did call the doctor's office and I am waiting for a call back. We have a follow up appointment on Friday.<br />
I am really hoping that this is just a temporary thing and that there was not some kind of damage done to his vestibular system. I am thinking that it could be that it is super swollen in there or that his ear tube on that side is clogged. <br />
Jack is going through everything with his ears and at the same time his two front teeth are breaking through. I feel like this little guy can't catch a break. I have been staying home with him but I am hoping to go back to work tomorrow. We shall see. MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com1tag:blogger.com,1999:blog-1662996835934184290.post-18272096998827521892013-12-14T18:41:00.000-05:002014-09-05T10:38:19.079-04:00Jack Is Getting Through ItJack is going through a tough time. His ears are draining tons of bloody drainage. It is freaking Julianna out. It occurred to me that she is not likely to follow in my career footsteps. LOL.<br />
Dr. Roland told me that Jack's head may swell considerably. He said it may swell so much that his ears may stick out. Well, that is what is happening. His ears are sticking out about as far as they possibly can. That really started last night as the swelling progressed. He has also vomited a few times, but his appetite does not seem to have diminished. <br />
He has been having trouble sleeping and it seems like he can't get comfortable. His only pain meds are tylenol and advil. He still does seem to be pretty smiley when he sees me or Julianna.<br />
They told me that most kids go back to their regular activities after about a week. It has only been a few days but right now I can't see how this will all have cleared up in a few more days. Maybe, but it seems unlikely to me.<br />
We have been stuck in the house for a few days and it is starting to get a bit old. It snowed today so it was unlikely we would go out and do much anyway. If he is feeling better tomorrow we will try to go do something, even if it is just to go to the grocery store. <br />
I am hoping that his swelling will go down soon and he will start to feel better. We are supposed to have his cochlear implants activated the first week of January. I am hoping all the swelling will be gone by then. :)
MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com0tag:blogger.com,1999:blog-1662996835934184290.post-45363879396124456202013-12-12T10:52:00.000-05:002014-09-05T10:40:12.814-04:00Surgery Over - Jack Is A Tough Little GuyThe surgery is over and we are home. Jack did great!!<br />
I dropped Julianna off at my friend's house at 5 am. I then went to pick up my friend Cathy who was kind enough to accompany me to NYU for Jack's surgery. We parked at about 6:15 and made it to the sign in area by 6:30, just when we were supposed to be there.<br />
All the paperwork went smoothly. Each doctor came in to speak to me before the procedure. I explained Jack's lung issues to the anesthesiologist. She said she would get some extra things set up in case he had any problems. Dr. Roland came in and he told us it should take about 2 1/2 hours in the operating room. He said the actual procedure would be about 45 minutes per ear. <br />
Almost exactly 2 1/2 hours later Dr. Roland came out to speak to me. He said Jack did well, but he did have some breathing issues during the surgery. His oxygen saturation dropped significantly at one point and the anesthesiologist gave him an albuterol treatment. He responded positively to that and they were able to keep going. They did not have trouble extubating him. <br />
I saw him in recovery pretty quickly. He had some blow by oxygen but he was still sleeping. He had a huge bandage on his head. When he starting waking up we gave him a small bottle of water, then diluted juice and finally formula. He was obviously in pain and they wanted to give him fentanyl. I asked if we could try him on tylenol first. They finally agreed and he fell asleep shortly after the tylenol.<br />
We left NYU a little before 2 pm. I made it home in time for the school bus. Julianna was happy to see me and Jack but she was also pretty happy that my frind's college age daughter would be taking her to ice skating. She also took her to school in the morning and helped her with the kindergarten Christmas project, a milk carton and graham cracker gingerbread house. I was supposed to go with her but I could not because of Jack's surgery. They were allowed to bring another special person if a parent couldn't go. I was a little worried about not attending this, but she seemed to have a great time.<br />
Jack had a bit of a restless night. He had significant bleeding and his bandage was soaked through by the morning. Dr. Roland told me to expect this. He also said Jack would have a lot of bloody drainage because he has the tubes in his ears and they allow more drainage out. I took the bandage off this morning (as directed) and I was amazed to see that the incision lines are barely noticeable. They are behind his ears and there are no sutures. Dr. Roland told me he was closing it all from behind and there would only be two absorbing stitches. I am not sure how they do this, but it is pretty amazing. His head does look a little swollen. His body does not look too swollen today, but it did yesterday. They gave him some steroids just before the surgery (for his lungs) and that made him pretty puffy.<br />
I am glad the surgery is over. We will be going for activation in the beginning of January. Thanks for all the good thoughts, prayer and assistance!!!MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com2tag:blogger.com,1999:blog-1662996835934184290.post-84870069512218841652013-12-09T23:59:00.003-05:002013-12-10T00:47:27.344-05:00Jack Passed His Pre-Surgical Testing<P>Jack passed! The doctor signed off and Jack is cleared for his surgery. I am pretty happy about it. I have not heard from NYU yet so I don't even know what time it is yet. It was supposed to be 8:30 am last time so I am thinking it should be about that time.</p><P>
Julianna was examined as well. No one thought the node on her rib cage was significant. Her blood work came back and there were a few weird things there. First, it showed that she has had the Epstein Barr virus. It does not appear active and we are not sure when she had it. I suppose it could have been anytime since the symptoms are typical of any childhood upper respiratory infection. She also had a low blood glucose. It was 63, not profoundly low but not normal (normal low is 80). We had just come from breakfast with Santa so she had recently eaten. There was also something off with her BUN (blood urea nitrogen). She said it was insignificant but I didn't see the values. I am going to call Labcorp and get a copy of the results.</p><P>
When the doctor was talking about the blood work she said everything that could suggest a lymphoma or leukemia is normal. Obviously that is great, but she didn't say too much about the values that were off. I am certainly going to investigate more. Julianna's teacher mentioned to me that she seemed a bit fatigued lately and wasn't up to par. I am hoping whatever it is will go away soon, but I will see someone else if it does not.</P><P>
So we did have a productive visit and I am relieved that the news was pretty good. </p><P>MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com1tag:blogger.com,1999:blog-1662996835934184290.post-49200392054326480432013-12-09T11:05:00.000-05:002014-09-05T10:31:29.865-04:00One Surgery Date Cancelled, One Coming UpSorry I haven't posted in awhile. Things have been a bit crazy here. Jack's surgery was originally scheduled for 11/20. It was cancelled because he failed the presurgical testing. <br />
We went to the pediatrician. She did not like the way his lungs sounded. Jack's lungs never sound great because he has bronchopulmonary displasia (BPD). She sent us to the pulmonologist who said he could not have the surgery because he was congested. He really wasn't that congested but no one will take a chance with Jack's lungs because of his history. He is now on inhaled steroids twice a day via nebulizer. <br />
He is rescheduled for the surgery for Wednesday December 11. He has presurgical testing this afternoon. I am hoping the pediatrician clears him and we do not have to go to the pulmonologist.<br />
Here is more information about some of Jack's lung issues.<br />
What is BPD?
<b>Bronchopulmonary Dysplasia
</b>(BPD) is a lung disease that occurs most often in babies who were born severely premature—more than 10 weeks before their due date. Babies with BPD have inflammation and scarring in the lungs. <br />
BPD usually is a complication in premature infants being treated for respiratory distress syndrome (RDS). RDS is a condition in which the baby's lungs are not developed enough to take in the air they need.
<br />
Babies with RDS must have oxygen and often need to be on a breathing machine to prevent brain damage and to save their lives. But the oxygen premature babies need can damage their lungs. When it must be delivered into the babies' lungs by a machine, it may be even more damaging. The infants whose lungs require this treatment are at risk for developing BPD.<br />
Many infants with BPD recover and improve with time, achieving normal or near normal function.<br />
Jack was on the ventilator in the NICU for a prolonged period of time. That caused his lungs to be damaged and scarred from the pressure. At one point the ventilator was not enough for him and he was put on an oscillator. The oscillator sprays oxygen into the baby's lungs and has less pressure. The oscillator saved his life. Luck was on our side because essentially the oscillator is it. At one point in his treatment his numbers were dropping even on the oscillator. They explained to me that they could maybe move him somewhere that has the technology for ECMO, which is essentially a heart lung machine.<br />
ECMO (Extracorporeal Membrane Oxygenation) is a procedure that uses a machine to take over the work of the lungs and sometimes the heart. ECMO is used for babies, children and adults. It is a special way for a machine to help your child, while he or she is very sick. ECMO provides time for your child's body to rest and recover. You might hear your doctors, ECMO specialists, or nurses refer to this process as ECLS (Extracorporeal LifeSupport) or bypass, which is saying the same thing, just in a different way.<br />
Let's take a moment to better understand each word in ECMO.<br />
Extracorporeal means that the blood circulates outside of the body with the help of a machine.
Membrane Oxygenation, referred to as the "artificial lungs," is a special part of the machine that puts oxygen into the blood and takes out carbon dioxide just like our lungs do.<br />
We lucked out and Jack rallied with the oscillator, although it took some time. On Christmas Day last year Jack extubated himself and was able to breathe on his own. It was nothing short of a miracle and no one could believe it. He then went on high flow nasal oxygen and remained on that for a few months. He still had plenty of issues and stopped breathing countless times. He rallied each time.<br />
These are the reasons why thay worry about Jack with the general anesthesia. They are worried that they will not be able to extubate him and he will not start breathing on his own. He had general anesthesia in June when he had his ear tubes placed, but it was a much shorter operation and a different type of anesthesia.<br />
I am hoping that he will pass and be able to have the surgery because not hearing is really slowing his development. However, I am a nervous wreck about him having the general anesthesia. <br />
Julianna will also be seeing the doctor today. She had a very enlarged lymph node and a cluster of accompanying enlarged nodes at the base of the left side of her neck. I took her to the doctor who didn't seem to think it was a big deal. She gave me a prescription for blood work but told me I could wait to see if it changed. She said if she gets a fever it would explain why it was there or if it went away not to worry about it. Well, it got smaller so I was not too worried about it. However, the other night I noticed she has a very enlarged lymph node at the base of her ribcage. It freaked me out and we went immediately for the blood work. Today we are following up with the pediatrician. They had told me last time if the nodes hurt it is usually nothing. They both hurt her when they are touched so I am hoping it is nothing. It is strange because she has no fever and they also cultured her throat, negative. She has no complaints of anything at all. I have spoken to other Moms about this and have heard numerous similar stories where it turned out to be nothing at all. Obviously I am hoping for the same outcome.<br />
Other than all this medical stuff we have been busy. We had two Santa vistis in two days. On Saturday we had breakfast with Santa with Grandma and Pop-Pop and on Sunday we saw Santa agian at my work kid's Christmas party. <br />
So, hoping all goes well later today. If so, Jack will be getting his surgery on Wednesday and I will have a sigh of relief about Julianna.<br />
MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com2tag:blogger.com,1999:blog-1662996835934184290.post-12583040857672861942013-11-01T21:47:00.002-04:002013-11-01T21:54:19.138-04:00Pictures These are not in order but they are all pretty recent.<br />
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8Tn3Sh1_DOZWRaGhCNs_OdmU_9FE-InNMyrInRNL9VWUaF1-eSBNEam_QwZ6CDOTyjFdII64uMHdfi7V708x77fpDQfu-pzvFxKIA2R6D38B4gHpqUhR-PLnyS9F0yaGaT2R4J48v1Dm_/s1600/2013+471.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8Tn3Sh1_DOZWRaGhCNs_OdmU_9FE-InNMyrInRNL9VWUaF1-eSBNEam_QwZ6CDOTyjFdII64uMHdfi7V708x77fpDQfu-pzvFxKIA2R6D38B4gHpqUhR-PLnyS9F0yaGaT2R4J48v1Dm_/s320/2013+471.JPG" width="239" /></a></div>
<div class="separator" style="clear: both; text-align: justify;">
Jack doing tummy time. He is getting really good at pushing himself up.</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBaqJb10gRtEg9mziaArzQVCuFu4Ugk8decHSlmyZNr8RrAM4KZLy4YOX4MU73lIEtsy6h7TuGCvnR9FAQip9py95XcBph8AX4ojSzFFgInUTP67eH8ZKlwcq2pAPLKSEjhdW_-xHetwk8/s1600/2013+091.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBaqJb10gRtEg9mziaArzQVCuFu4Ugk8decHSlmyZNr8RrAM4KZLy4YOX4MU73lIEtsy6h7TuGCvnR9FAQip9py95XcBph8AX4ojSzFFgInUTP67eH8ZKlwcq2pAPLKSEjhdW_-xHetwk8/s320/2013+091.JPG" width="239" /></a></div>
<div class="separator" style="clear: both; text-align: justify;">
Jack wearing his hearing aids.</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVPdpwBhA4LegZEYuWt8xRNbAfXhoU3HXVeUEhcY8g7zxUm0EZKBPpXZjnmlLKBb95TZ3O96dRDCljANlIxeyUzpJPRfR_jBVoXR1T0SYK82Z_IF_D2WENfygfP36Jk9V5KiFcZfhGKJu0/s1600/2013+498.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVPdpwBhA4LegZEYuWt8xRNbAfXhoU3HXVeUEhcY8g7zxUm0EZKBPpXZjnmlLKBb95TZ3O96dRDCljANlIxeyUzpJPRfR_jBVoXR1T0SYK82Z_IF_D2WENfygfP36Jk9V5KiFcZfhGKJu0/s320/2013+498.JPG" width="239" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
Jack wearing his helmet.</div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHkSWjDhQpIFHoELDMbBtC0PS4aMYSmmW0r7nE5ZhgpJtGURvRdVEcsU1ByIB2U6UGR18hl3YImiB0RhapTg8oP-l-xyHW93nEXotMcT7qjwGVPgN_M-Rm_5gkfJmUu2rBrs74Lv7sxViT/s1600/JackHalloween2013.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHkSWjDhQpIFHoELDMbBtC0PS4aMYSmmW0r7nE5ZhgpJtGURvRdVEcsU1ByIB2U6UGR18hl3YImiB0RhapTg8oP-l-xyHW93nEXotMcT7qjwGVPgN_M-Rm_5gkfJmUu2rBrs74Lv7sxViT/s320/JackHalloween2013.JPG" width="320" /></a><br />
<br />
<div style="text-align: justify;">
Jack the pumpkin boy. He is sitting by himself without support.</div>
</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrDeeIrNqK1psDm-_K2tFMRg4AsvtVTSQdawTfk2WjQZosgcshzvjTS2WN9mi99cyse-VKTyNq_XflidYiu2nLZc0ZFlxa2TU8KBKXl9hKNOF72BjK2BtZNtAwXNso4O0aVZkSrOtQWiXg/s1600/JuliannaHalloween2012.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrDeeIrNqK1psDm-_K2tFMRg4AsvtVTSQdawTfk2WjQZosgcshzvjTS2WN9mi99cyse-VKTyNq_XflidYiu2nLZc0ZFlxa2TU8KBKXl9hKNOF72BjK2BtZNtAwXNso4O0aVZkSrOtQWiXg/s320/JuliannaHalloween2012.JPG" width="239" /></a></div>
<div style="text-align: center;">
<br />
<div style="text-align: justify;">
Julianna as Draculaura from Monster High.</div>
</div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk05cy2y6RUPyU1g1pHdes53rUc7u3wyZwmgkYnYkvTRBE2yjumLQAfikfX5HSI6KBxuENS581d5TfDiRBQ116tdI24poc00yTpQyGV70PJNmsLP3OuKRodHL_Jwa-HozJ0EuDzFD5TUyr/s1600/kidsHalloween2013.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk05cy2y6RUPyU1g1pHdes53rUc7u3wyZwmgkYnYkvTRBE2yjumLQAfikfX5HSI6KBxuENS581d5TfDiRBQ116tdI24poc00yTpQyGV70PJNmsLP3OuKRodHL_Jwa-HozJ0EuDzFD5TUyr/s320/kidsHalloween2013.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
Julianna and Jack on Halloween.</div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjss_CRYGuGaN2BK2rsykaV49a6U4Xze30zapTWRIM_r771PotDhaIz0RytL47DNCvzGkp6uiCDS9NGHnKielV_AY6JPdRaKI4Z66jA6bWPKLE1e-Fk620VFtKZPFn6lG3MniSJlq905fgl/s1600/2013-falljcp45.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjss_CRYGuGaN2BK2rsykaV49a6U4Xze30zapTWRIM_r771PotDhaIz0RytL47DNCvzGkp6uiCDS9NGHnKielV_AY6JPdRaKI4Z66jA6bWPKLE1e-Fk620VFtKZPFn6lG3MniSJlq905fgl/s320/2013-falljcp45.jpg" width="320" /></a></div>
<div style="text-align: center;">
<br />
<div style="text-align: justify;">
Pictures of our family.</div>
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZyYXUenjDHi0-iLr43E2OfFQ4-UDNrz89CTv85uKt9eBz6nZwZ7av3G2PuyYPEny7bI4NbWiIpnCCsbw4Nbh19pKODS-WAnE2QzdWog6NEc85vO1yYp3Om1NK2DmApywogfPPWe1CSH10/s1600/2013-falljcp20.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-GRAHw9eoAIkXUOx7Po1pu7W4Fw7KKCpC6DsBQmqp0rOzGr56oBUl38Oq3Ibxv54gBn3s2MbLV0UNxalEx506YHoFmrbvji6p-a-RUfd10_bx_4IRe-lnl3v8OvZm2s__vglg-q_YDJIT/s1600/2013-falljcp20.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-GRAHw9eoAIkXUOx7Po1pu7W4Fw7KKCpC6DsBQmqp0rOzGr56oBUl38Oq3Ibxv54gBn3s2MbLV0UNxalEx506YHoFmrbvji6p-a-RUfd10_bx_4IRe-lnl3v8OvZm2s__vglg-q_YDJIT/s320/2013-falljcp20.jpg" width="256" /></a></div>
<div style="text-align: center;">
<br />
<div style="text-align: justify;">
Me with my babies.</div>
</div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2541pUKQOnsX1doXgd_VJVWlDaa51ZZdYv3ttcTc5t2TRcWXDJ-RxEzsepac5hlNFM2ATpkmcmC9_nlKWhDz4ljlNJw8uHomoMB9f4CjcwhCVT_hSiYYYUfzGH17ynuHKO67Hs1qb9xKq/s1600/2013-falljcp35.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2541pUKQOnsX1doXgd_VJVWlDaa51ZZdYv3ttcTc5t2TRcWXDJ-RxEzsepac5hlNFM2ATpkmcmC9_nlKWhDz4ljlNJw8uHomoMB9f4CjcwhCVT_hSiYYYUfzGH17ynuHKO67Hs1qb9xKq/s320/2013-falljcp35.jpg" width="320" /></a></div>
<div style="text-align: center;">
</div>
<div style="text-align: center;">
<div style="text-align: justify;">
With Grandma and Pop-Pop.</div>
</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjItqsPERpTH3RUJJtd5wUnNf-jvJ5LSDTOsarNvwdMF2uIebyVZsV1tJYJEeuNfZufCaZ2eDZ13CpfdpAPDM__jaXNoBiTAt9goD2VUlTfmSh5mtTakLtlVfmaMZsNBtH_aSzz6E8ptxaJ/s1600/2013+252.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjItqsPERpTH3RUJJtd5wUnNf-jvJ5LSDTOsarNvwdMF2uIebyVZsV1tJYJEeuNfZufCaZ2eDZ13CpfdpAPDM__jaXNoBiTAt9goD2VUlTfmSh5mtTakLtlVfmaMZsNBtH_aSzz6E8ptxaJ/s320/2013+252.JPG" width="239" /></a></div>
<div style="text-align: center;">
<br />
<div style="text-align: justify;">
Julianna with Uncle Rich at the Maker Faire.</div>
</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com0tag:blogger.com,1999:blog-1662996835934184290.post-25587376659810206002013-10-21T12:25:00.001-04:002014-09-05T10:43:08.863-04:00Moving Along and Rolling Over!!We are moving along and getting some dates set. Jack will have his surgery for bilateral cochlear implants on 11/20, pending insurance approval. They are changing a lot of the protocols and they said he might not even have to stay overnight. He is likely to be the first case since they go in age order with the youngest being first. They do this because of the fact that they can't eat prior to the anesthesia and the babies have the hardest time with that. I am happy we are moving along with it. If all goes well he should be hearing before Christmas.<br />
<br />
Jack will get his helmet on Wednesday the 23rd. We went for the fitting last Friday. They put a socklike material shaped like a hat on his head. That material had sensors all over it. Then they used a type of gun that read all the sensors. All that data went to a computer and it made a 3-D model of his head. They will use that to make his helmet. I got to pick from a bunch of different patterns but I decided on basic blue.<br />
<br />
Jack rolled over!! He finally did it! He went from front to back in therapy but without being touched. He has since done it a few times at home. I am very proud of him and relieved. He is seeing a Developmental Neurologist on Wednesday so I can get a better idea where he stands with everything, but I am thrilled that he finally rolled over.<br />
<br />
Jack's hearing aids are not doing anything for him. I have not been putting them on him much because I am concerned that he will choke on them or swallow the battery. Button batteries are a huge big deal if a baby swallows them. If that should happen they usually require surgery to get them out and and caustic if they are left in. If he is not getting any benefit from the hearing aids I prefer not to chance any issues. I do sometimes put them in when he will be right in my field of vision, but never in the car and I am leery about it for daycare.<br />
<br />
Jack is a very verbal baby. People always ask me why he coos and yells so much if he is deaf. I am told this will stop if he is not implanted. That is one of the reasons why it is important to get the cochlear implants so early. All the cooing and repetitive noises babies make are the building blocks to language. He needs to do this in order to learn to speak later. If I sit him on my lap and make certain noises he is able to copy them. When this first started happening I was sure they had made a mistake and he was not actually deaf. The teachers from the deaf school and the evaluators all told me that deaf babies do this. He sees how I am moving my mouth and copies that. They said that is one of the reasons they do universal newborn hearing screens now, because deaf babies fool us. They said that, before the screening, they would not know the babies were deaf until they failed to develop language at 3 or 4 years old. That is really late to find out that a baby is deaf. If you want the child to speak you need to find out early and start therapy right away.<br />
<br />
Jack has physical therapy twice a week, speech therapy once a week and cranio-sacral therapy once a week. NYU told me they want him to have auditory therapy four times a week and the deaf infant program wants him to attend twice a week for 2 1/2 hours each time. I am having difficulty getting all these things done, getting to all the doctors appointments, getting to work and doing everything for Julianna. Our house is still under construction post hurricane Sandy. It is getting closer to completion. I am hoping it is finished soon. When it is I would like to hire a full time, driving nanny to take Jack to a lot of his appointments as well as get Julianna on and off the kindergarten bus. Right now I am getting by with luck, prayers and the help of great friends.<br />
<br />
I went to get my hernia checked again and it is looking like I will need the surgery very soon. I am hoping I can coordinate it with Jack's surgery and we can recuperate at the same time. I hope it works!<br />
<br />
We are busy but we are enjoying fall. We have gone to the pumpkin farm and apple picking. I took Julianna to the Halloween events at Sesame Place and she had a ball. She is still in ice skating, dancing, violin and arts and crafts.<br />
<br />
I just passed the 4 year anniversary since my cancer surgery. I have only one more year that is considered pretty risky. We are super happy and life is good!!MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com2tag:blogger.com,1999:blog-1662996835934184290.post-4327962395434326182013-09-30T10:28:00.000-04:002014-09-05T10:35:06.784-04:00Jack Needs A Helmet<br />
I took Jack to the neurosurgeon because his physical therapist said she is concerned that his torticollis is not responding to therapy as much as she had hoped. Jack's torticollis was so bad at first and it got much better right away with therapy. It wasn't completely better and he seems to continue to want to hold his head to his right side. Since he does this his head is developing an odd shape. <br />
<br />
The neurosurgeon examined Jack. He said he is generally against helmets. He feels that a baby's head shape will get better by itself as the brain grows and they start spending more time on their stomach.<br />
He also said that he felt Jack was an exception to this. He said Jack had as bad a case of torticollis and plagiocephaly (misshaped head) as he has seen. He said that since Jack is not yet rolling over and we don't know when he will, that it might not self correct. There is a small window of time where the skull is soft enough to correct the odd shape and we may miss it if we don't act soon. <br />
<br />
He gave me a prescription for the helmet. I need to take him to an orthotist where they will make it for him. I am hoping they will figure out a way that it can work with the hearing aids and then the implants. <br />
<br />
I feel so bad that Jack has to endure all these treatments. He is a happy guy and doesn't seem to complain much but it seems so unfair. I am happy that he is getting it all now and I remain hopeful that he will progress to the point that he doesn't need more than the cochlear implants by the time he goes to school. <br />
<br />
Jack is ten months old now. He is still not able to roll over. I keep being assured by all the therapists that he does not have cerebral palsy. I remain unconvinced. I don't get any answers when I ask why he is not progressing. He has therapy four times a week and I do the exercises with him as much as possible yet he does not seem to be getting much better. I am looking for different specialists to take him to to see if I can get any new ideas.<br />
<br />MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com5tag:blogger.com,1999:blog-1662996835934184290.post-34193758671986481802013-09-17T14:09:00.000-04:002014-09-05T10:44:40.008-04:00Hearing Aids, NYU, Dr. Citron<br />
<br />
We finally got the hearing aids. We got them on Wednesday the 11th. He didn't seem to have any notable response to anything with them in. There is a lot to the care and testing of the hearing aids. I had a lesson on everything when we picked them up.<br />
<br />
On Thursday and Friday last week we went to NYU. We had three appointments. Two of them were to test Jack's hearing in the booth. They put us in a sound proof booth and put a small ear phone like device in Jack's ears. Then they send sound through them to see if he responds. If they think he does they make a stuffed monkey light up and play the cymbols. <br />
<br />
They felt he responded to certain sounds in his left ear at about 75 dB. He only responded at certain frequencies. Personally, I really didn't note him to be responding all that much.If he moved his head or turned at all they were saying he was responding. He is a pretty antsy guy so it is really hard to tell why he is moving. Hearing at 75 dB is still a pretty profound hearing loss and he still qualifies for cochlear implants, but it is a lot different than the results of the auditory brainstem response (ABR) tests that he had at LIJ. <br />
<br />
The audiologist told me that his hearing may be a bit better than it was when he was previously tested. If that is the case, his hearing aids are programmed wrong. She said that they could be hurting his ears and they may need to be reprogrammed. So I took them off him. She asked me if I wanted Jack to have another ABR at NYU. I told her that I do. The ABR is objective and the behavioral booth is very subjective. I don't want to damage any residual hearing he may have by using hearing aids that are programmed wrong. <br />
<br />
The next day he had the same test for his right ear. He was a little irritable and the test was coming out all over the place. His right ear has auditory neuropathy and that means he doen't process sound even if he hears it. He did not test well with that ear.<br />
<br />
Jack was also evaluated by a speech therapist. She was listening to his babbling and counting the different types of sounds he makes. She told me his cry sounds immature and she thinks he may have some vocal cord damage. He will need to be evaluated for that. It seems like we hear bad news at all of these appointments and I find it pretty frustrating. <br />
<br />
We go back to NYU this Thursday for two more appointments. I am going to try to take the train this time. It was pretty tough driving in there and I was forced to park in a garage costing $37. I think it might be cheaper and easier to take the train even though it will be rush hour. We will see.<br />
<br />
On Sunday we had my Dad so Betty could go to a baby shower. He is getting pretty bad and it was hard dealing with him. Julianna was very helpful and she is pretty understanding about Pop-Pop's brain disease. It was nice to be able to give Betty a bit of a break.<br />
<br />
I had an appointment with Dr. Marc Citron my medical oncologist. He took blood and sent me for a chest x-ray. He did an exam and said he thinks everything looks normal. He also told me that I am now in the time where I have the greatest risk of recurrence. Once this year passes my chance of recurrence will start dropping dramatically. It can be pretty stressful to think about so I try not to.<br />
<br />
Julianna is enjoying school and her activities. She has violin, ice skating, dance and arts and crafts. I am trying to find a place for swimming lessons that is a little closer to home than our last place. Jack i s happy and is proud of his two new teeth. We are all enjoying fall and having a good time!<br />
<br />
<br />MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com2tag:blogger.com,1999:blog-1662996835934184290.post-33476652657692963662013-09-05T11:24:00.002-04:002014-09-05T10:36:16.440-04:00Kindergarten, No Hearing Aids Yet, Pictures<br />
Julianna started kindergarten on Tuesday!! It was a big day for both of us. She was excited and I was nervous and sad that she is growing up so quickly. My little 3 pound baby is with all the big kids now. She did say some of the kids said she looked like she was three and that made her sad. I told her to please remember that Uncle Rich was made fun of for being small and now he is the tallest person she knows. Kids can be mean. I hope she learns to let it all roll off.<br />
<br />
Jack was supposed to get his hearing aids yesterday. I took the day off for the appointment. About two hours before the appointment they called me to say the hearing aids weren't in and I needed to reschedule the appointment. The lady there (LIJ) was pretty nasty as usual. After speaking to the supervisor I was able to get an evening appointment for next Wednesday. I hope it works out this time.<br />
<br />
Here are some pictures:<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGgSFglqehUlHDPZ3CQDtSVA8Ra-urJRww9lyOX-XCSGNtbPUgAenlPfWrnToB_zR-V8nm3ftfQPsPvIbuJT-7b8AZ8Sq48nyiUKWjYCA4yFFqw6B5IOT1cFfU4uEOSWdiSfSTTBG1A75o/s1600/137.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGgSFglqehUlHDPZ3CQDtSVA8Ra-urJRww9lyOX-XCSGNtbPUgAenlPfWrnToB_zR-V8nm3ftfQPsPvIbuJT-7b8AZ8Sq48nyiUKWjYCA4yFFqw6B5IOT1cFfU4uEOSWdiSfSTTBG1A75o/s320/137.JPG" height="320" width="239" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Julianna ready for the first day of kindergarten.</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigDGijlwdquCzQ1NlEUCXnaOcZEKHXXLuDv37KHMdzumX-TVUdFSfqpWe_9xLzmJRdnvNRSddvBNIU3ZfFneA75WVOL4QdAZeKJQtDgvYL_uQ7nDKiHgjTR6MzNJ97e0Y0jpUBADTCmcVs/s1600/148.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigDGijlwdquCzQ1NlEUCXnaOcZEKHXXLuDv37KHMdzumX-TVUdFSfqpWe_9xLzmJRdnvNRSddvBNIU3ZfFneA75WVOL4QdAZeKJQtDgvYL_uQ7nDKiHgjTR6MzNJ97e0Y0jpUBADTCmcVs/s320/148.JPG" height="320" width="239" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Julianna getting on the bus. I followed in the car.</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjItGgjGBFc6o_9x7zedf2h90nhomGS5EszLwQXlF3unGmUQ0ch3XlZeUDhxnyFukluvPoa9tm-9j9haDfofAiDhHIpbhRXxWrzquU1NwjTqqHZQZAnGY7MUfqygQjUuTpSx-BbKbNK7ofI/s1600/Jack+9+months+old.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjItGgjGBFc6o_9x7zedf2h90nhomGS5EszLwQXlF3unGmUQ0ch3XlZeUDhxnyFukluvPoa9tm-9j9haDfofAiDhHIpbhRXxWrzquU1NwjTqqHZQZAnGY7MUfqygQjUuTpSx-BbKbNK7ofI/s320/Jack+9+months+old.JPG" height="320" width="239" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Jack at 9 months old. Super happy.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidrw05uICbWhS51HSk5_7L_hQLhNgA0QU_KEhHhEQirz9eJvDbcVFFtyNStiW7eFbAe0MiO47tC3EhLNjZPhGna9PV_DprPSRtMQYLMCZdKysdBmi-dJ7Y3kKiSLTJDpSr517ZhBSjwfm7/s1600/128.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidrw05uICbWhS51HSk5_7L_hQLhNgA0QU_KEhHhEQirz9eJvDbcVFFtyNStiW7eFbAe0MiO47tC3EhLNjZPhGna9PV_DprPSRtMQYLMCZdKysdBmi-dJ7Y3kKiSLTJDpSr517ZhBSjwfm7/s320/128.JPG" height="239" width="320" /></a></div>
View from our dock in PA. We are sorry to see summer end.<br />
<br />
<br />
<br />
<br />MaryEllenhttp://www.blogger.com/profile/15457864003285571449noreply@blogger.com1