tag:blogger.com,1999:blog-2036171831065683702024-03-05T00:26:54.490-05:00The Amazing AmbroseThe adventures of a very special little boyAmbrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.comBlogger173125tag:blogger.com,1999:blog-203617183106568370.post-64730374335231343142015-01-15T11:24:00.000-05:002015-01-15T12:12:19.321-05:00Ambrose's Stables and Horse Pedigree Information<div dir="ltr" style="text-align: left;" trbidi="on">
Since the last update, there has been a furry flurry of activity at Ambrose's Stables. He was so excited after his visit with the horses Jeremiah and Modock that he decided to adopt several rare and special little horses. They constantly watch over him and he is always happy to reach out and find one nuzzling his hand.<br />
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Surrounded by hoofs</div>
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So lets me introduce the horses in no partucular order of importance or heirarchy:</div>
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This is Modock. He was sired by a much larger horse who coincidentally was also named Modock. He can gallop at full stride but is most comfortable just sitting down and taking it easy. Modock won the Triple-Crown years ago but nobody can really remember what year, although we do have the Blue-Ribbon. Modock likes Eggs-Benedict for breakfast and has taken to long afternoon naps where he dreams of frolicking in a grassy field and rolling-in-the-hay.</div>
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Modock</div>
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Then there is Sergio. Med-Sergio is his Pedigree name. A dashing little pony who is handsome and smart and has a mane that just won't quit! Always by Ambrose's side he is often handling such mundane tasks such as wiping Ambrose's nose. Never a complainer, he always gets extra oats but we know that he sometimes hides his oats and gives them to other horses who are hungry.</div>
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Med-Sergio</div>
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Little Bright Eyes is a very, very old horse whose grandfather came over to America with Desoto when he explored America in the 1500's. His impressive lineage includes the horse that the Roman Army modeled the Trojan Horse from. If you look closely you can see the resemblance. His name is deceptive because his eyes are actually very dark. Little Bright Eyes however, despite his advanced age, is very stout and vigilant, and can do anything a younger horse can do and do it with more experience and more confidence. But then he too needs an afternoon nap. Little Bright Eyes is fond of Ambrose and spend alot of time watching over him when the other horses are in the stalls or eating hay or grazing on the carpet. He is loyal and determined and he loves Ambrose and would do anything for him.</div>
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Little Bright Eyes</div>
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And last but not least Blackie. Blackie is a horse imported from the Himalayes. Horses from his region work closely with sherpas to drag trust-fund adventurers to their death at high altitude trying to reach remote mountain peaks. The horses were famous for being able to hold their breaths for long periods of time, and to be able to "ski" back down the mountains with the bodies of the frozen climbers strapped on their backs. Blackie was sired by Whitey, the first horse to climb Kilamanjaro. The biggest of Ambrose's horses, all of the other horses thing he is the most gentle, and so does Ambrose.</div>
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Blackie</div>
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So we are one big horsey-family.</div>
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The family thay nays together stays together.</div>
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So that is the biographical and pedigree information I think everyone needs, so if you are looking for a sire to your next foal, look no further than Ambrose's Stables.</div>
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By James Brown</div>
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Ambrose's Daddy</div>
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Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com2tag:blogger.com,1999:blog-203617183106568370.post-78637938019529762392014-04-26T12:36:00.001-04:002014-04-26T12:36:07.296-04:00Horses!<div dir="ltr" style="text-align: left;" trbidi="on">
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Ambrose recently made two new friends: Jeremiah and Modock. These are horses owned<div>
by my friend Janie. He got to pet them and feed them carrots. Next time he will try sitting on them and maybe riding a little. It was very exciting. <br /><br /></div>
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Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-50908583810872988532014-01-27T21:51:00.002-05:002014-01-27T22:02:12.616-05:00Ambrose turns SIX!!!!!!<div dir="ltr" style="text-align: left;" trbidi="on">
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On January 19, 2014, darling Ambrose turned 6 years old!!!!!!<br />
We are overjoyed and extremely blessed that our little boy has made it this far and is still going strong! <br />
James and I were both sick on his birthday and had to reschedule his birthday party. His actual birthday was a pretty quiet affair, with us wearing masks to try to protect him. It worked! Amazingly Ambrose stayed well throughout our illnesses and his full day of hospital appointments a couple of days later. He wore a mask that day.<br />
His rescheduled party was yesterday and a great time was had by all. Ambrose has a wonderful group of ladies who love him so much and have been great friends to us!<br />
Charla Reardon was joined by my dear friend Jillian Starr in creating facebook pages to encourage people to send birthday cards to Ambrose. We were so blessed and received 88 cards. The most ever. Our favorites are always the cards handmade by children.<br />
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<tr><td class="tr-caption" style="text-align: center;">Some of the wonderful handmade cards.</td></tr>
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Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-16063821277097412922013-12-05T19:46:00.001-05:002013-12-05T19:46:20.563-05:00SPOOKY<div dir="ltr" style="text-align: left;" trbidi="on">
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The above photo represents a very scary and discouraging issue. For the past 2 plus years, DHMC has been without a pediatric orthopedic surgeon. Ambrose had been seeing the previous Dr annually, keeping tabs on his scoleosis and his multiple skeletal issues. For the past couple of years I have been increasingly concerned that his curve seems to be getting worse. None of his various specialists paid much attention. However, recently, after ruling out other culprits, his pulmonologist felt that his scoleosis may be the cause of his worsening respiratory issues. When I heard they had finally found a new Ortho Dr., I was very excited for him to finally be seen. I was hopeful that he could perhaps try some kind of brace, but concerned that might restrict his lungs further. <br />
Well, I was very upset to learn that Ambrose's scoleosis is now measured at 90 degrees and considered severe and beyond repair. A brace would not be an option for him because of his respiratory compromise and also he is beyond what the brace could do. I already knew that I did not want to persue spinal surgery as I had been told by a PICU attending that he would never recommend it as he had seen kids like Ambrose do very poorly after such surgeries. I also learned that it is highly unusual for someone as young and small as he is to have developed such severe scoleosis and that the hardware they use in these surgeries is actually to big for him. So I was told "surgery isn't even an option."<br />
His right lung (seen on the left above as image is reversed) is very squished. His ribcage is twisted and sticks out in the back on his right side. I asked the Dr to look back in the computer to compare it to an older image. She found a chest xray from 3 years ago and measured the curve at 40 degrees. So in the 3 years that no Dr was watching, his curve went from 40 to 90 degrees and is now "beyond repair." It cannot be allowed to get any worse!!! The only thing that this Dr. suggested was having a custom molded seat back made to prevent him from curving any more than he already does when he is up against gravity. We are looking into this now. I am optimistic.<br />
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OK so I cheated a bit on Ambrose' Halloween costume. I made this gnome costume a couple of years ago for him and he looked so darn cute in it. Since his new diagnosis last year, following his whole exome study, I have wanted to modify this costume and make him : a HUMAN GENOME<br />
(G-gnome)<br />
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Of course he doesn't have a devilish bone in his body, but I couldn't resist. He looks so darn cute!</div>
Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-17265963373340354812013-10-20T20:12:00.001-04:002013-10-21T11:43:25.258-04:00JOY!<div dir="ltr" style="text-align: left;" trbidi="on">
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When I look into these eyes, my heart is filled with joy. These are Ambrose's "big eyes". Often we only see them for short periods of time, but this weekend we have seen them for hours at a time. </div>
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Ambrose is often awake with his eyes closed or rolled back for long stretches of time. When he has his "big eyes on" he is much more attentive to the world around him. </div>
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He has been engaging and smiling alot.<br />
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This past weekend, we were special guests at a Make a Wish fundraising dinner. I was asked to speak about what Make a Wish has meant to us. I am too shy to speak in front of a room full of people. My husband spoke and did a great job. I agonized about my decision to bring Ambrose. I know it would be meaningful for people to see this "wish kid", but I worry so much about exposing him to germs.<br />
It turned out to be a great night which Ambrose really enjoyed.<br />
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They had asked if it was OK having Ambrose sit at the front table. They wondered if it would be too loud for him. I thought it would be fine since he is hearing impaired. It turned out to be perfect. He loved listening to the music and especially the Karaoke. They had strings of lights up that he could see.<br />
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Our friend Winnie came. She loves Ambrose and Ambrose loves her too. Our boy had those big eyes on the whole night. We were there almost 3 hours. I can't recall the last time I saw him engaged with something for so long. Words really can't express how much it fills my heart with joy to see him like this. <br />
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Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-17251895778973537962013-09-22T20:44:00.001-04:002013-09-22T22:49:40.461-04:00<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4RikEdVqv042GJhNxYYQhU5rNmTN0FhpP_kDFARJCnNQLHxmhZXTsHHtu-ySugJkiRlmrTwlHqAB4YVA9dBNFKiqCQfn4Ioo7NeylXSXFZY27QeIg0IcVk_8q3Js4nZ2pgt0kGijtu_L5/s1600/IMG_1680.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4RikEdVqv042GJhNxYYQhU5rNmTN0FhpP_kDFARJCnNQLHxmhZXTsHHtu-ySugJkiRlmrTwlHqAB4YVA9dBNFKiqCQfn4Ioo7NeylXSXFZY27QeIg0IcVk_8q3Js4nZ2pgt0kGijtu_L5/s320/IMG_1680.jpg" width="240" /></a>Ambrose had a great summer. He had many adventures. Grandma and Grandpa visited. He went camping (luxury camping). We stayed in the Director's cabin at Green Mountain Camp. He went to the Wellness in Windham festival where he got his face painted. </div>
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He made several paintings which were were auctioned off to raise money for his father's Mission trip to Kenya this fall. He went for many walks, lost more teeth and got new ones, and had several doctor's appointments, of course. </div>
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We have tried a variety of different respiratory medications. We are currently doing chest PT am and pm followed by Advair. He does seem to be having fewer episodes of desaturations and is using a bit less O2 overall. We are also trialing him off of Synthroid. </div>
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Ambrose is the light of our lives and has been his usual wonderful, snuggly, loving self and we are so grateful for every moment with him!</div>
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Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-25071365980012076432013-09-22T20:41:00.001-04:002013-09-22T20:41:05.883-04:00Kindergarten<div dir="ltr" style="text-align: left;" trbidi="on">
Dear sweet Ambrose is now a kindergartener! He is technically a part of the Academy School, but is home schooled. We have instituted a new schedule of developmental activities to work into his day. He also has a daily "report card" (sticker chart) and receives many rewards. He has an A+! He has just been wonderful as he always is. He puts up with it all and participates (sometimes passively). It is very exciting for him to have reached this milestone!<br />
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Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-33179524341098376972013-05-23T22:41:00.000-04:002013-05-28T12:03:31.909-04:00<div dir="ltr" style="text-align: left;" trbidi="on">
Well Darling Ambrose is having a good Spring, yet keeping us on our toes as usual. He has been having frequent sudden desats following position changes, that require bagging and xopenex (an inhaled bronchodilator like albuterol.) Fortunately, they resolve quickly. The sudden onset and postional nature makes them appear like obstruction (Ambrose has a history of this which resolved once the correct angled custom trach was created) but the fact that it is resolved by Xopenex sounds like bronchospasm. To add another layer ontop of it, we have had the windows open and taken him outside alot during this period, which happens to be peak allergy season. Could it be allergy related?<br />
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We are now trying a twice daily inhaled steroid called Flovent. It will take a while before we see if it helps. I have also been trying to keep the windows closed and keep Ambrose inside. We have installed the AC since it has been muggy.</div>
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Ambrose and the children of the Dummerston Congregational Church with the tree they planted.<br />
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Ambrose sound asleep, playing his switch activated bongos. Sorry the video doesn't seem to work.<br />
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Ambrose's nurse helped him create this reversible masterpiece with his fingers and feet for Mother's Day.<br />
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Another video that doesn't want to play, but won't let me delete it. It shows Ambrose in is stander playing other LOUD switch activated instruments and he is totally unimpressed.<br />
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Ambrose also lost his first molar. It was not the loose one I've been watching for months, but a total surprise. I saw it on the back of his tongue after having brushed his bottom teeth and flicked it out of his mouth before he was able to swallow it. Yikes! He has now lost 12 teeth. Only 2 are unaccounted for and most have grown back. Unfortunately the sharp spikey ones that cut his tongue came back the same way. In fact, his tongue is crooked, with a deep groove in one side from these teeth carving into it. A couple of years ago we had a dentist file the two front bottom teeth. It was quite a scary ordeal for him and he wound up getting his lip cut as he was trying to get away from the drill. It did stop the daily assault on his little tongue though. Sometimes it's not easy being Brosie. But the continuous hugs, kisses, and cuddles help.</div>
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Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com1tag:blogger.com,1999:blog-203617183106568370.post-35984996533119028992013-04-08T11:05:00.002-04:002013-05-23T23:15:20.243-04:00<div dir="ltr" style="text-align: left;" trbidi="on">
Well, we have been home from the hospital for two weeks now and Ambrose is finally coming down to the upper end of his normal oxygen range and is not needing quite so much suctioning. It really takes him a long time to recover when he is sick. They sent him home on Augmentin antibiotics, which of course gave him terrible diarrhea and diaper rash, despite using Culturelle for Kids probiotics.<br />
(His White Blood Cell count was elevated at 18, indicating infection. His cultures grew normal flora, but they wanted to treat because of the WBC count.) He has been feeling much more like his wonderful self. <br />
I have been telling myself that he needs a hair cut for a while now. Yet I keep postponing doing it. It is hard to do as he keeps moving his head around. I want to get it done with quickly. His hair is also quite tricky as it is straight in front and very curly/frizzy in back. I always think, "What have I done?" mid haircut. It always looks crooked (because it probably is) and too short. His hair gets wild when it is long and has a lot of personality, which I love. When I cut it he loses some of that and it emphasizes how small his head is. I don't know why it always seems to take me by surprise and makes me a little sad. When his hair is long, it sticks up and I think of him as being like an animal in nature trying to make itself look bigger than it is. Before and after shots below.<br />
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Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-16752401434391926232013-03-23T12:21:00.004-04:002013-04-08T11:09:26.430-04:00Our 2 year no hospitalization streak has come to an end sadly.<div dir="ltr" style="text-align: left;" trbidi="on">
We had a good run. Ambrose is in the PICU. He had been sick at home for almost 2 weeks. The only exposure he had was at hospital appointments a few days prior to getting sick. I try to be so careful. It is so frustrating! <br />
Two weeks ago Ambrose began needing more O2, having copious secretions, and having fevers. Of course it was over the weekend. By Monday, his fevers were gone so I was hoping he was on the mend. He has weathered several respiratory illnesses at home the past 3 years, since we have had the ventilator and can give hime CPAP and pressure support. He always takes a long time to get over something. Progress is slow, but you see a few good signs and want to believe he is getting better. I agonize over the decision to get a physician involved, especially since I believe that is how we got sick in the first place. <br />
The other night when I got home from work (at midnight) Ambrose's nurse told me that he was desating while sitting upright and only tolerating laying down in his crib, despite xoponex and some bag breaths. This was quite concerning. I put him on his vent for the night and tossed and turned (as did Ambrose) knowing I would have to make a decision in the morning. When morning finally came, Ambrose immediately desatted upon coming off the vent, despite the fact that he was lying in his crib. I called his pulmonologist, who was at a conference. Fortunately her secretary called her on her cell phone, she called me, then the PICU and made the arrangements. I called 911, for only the 2nd time. I usually try to transport him myself, but knew they could transport him lying down. Rescue, Inc. did a great job with him and have just been wonderful to us! He went to MY hospital, BMH, awaiting transport to DHMC. Everyone there was great too! After the obligatory few hr wait for transport, the DHART team came to transport him. When moving him from the ER stretcher to the ambulance stretcher, Ambrose had a big desat and distress. After instilling some saline in his trach he coughed up a huge, thick green mucous plug. <br />
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The PICU attending spent about 45 min with ultrasound looking for a good vein and using it for guidance in putting in a peripheral IV. Poor baby had to have his arm taped to a board. Needless to say, he did not like this. I do appreciate the care that was taken to try to prevent repeated unsuccessful pokes. <br />
Ambrose had various cultures taken and was started on IV Zosyn and inhaled Tobramycin. He had many seizures that day as he had missed some of his seizure meds during his hectic day. It took 6 hours after he was admitted before they finally got meds for him. That is my biggest pet peeve. It should not take that long and that has always been my experience there.<br />
Anyway, my darling did well, grew essentially normal flora and was able to come home Sunday afternoon (2 days later). It seems that the plug was the source of much of his distress. His WBC count was elevated at 18, indicating infection but cultures were normal. He went home on antibiotics.<br />
He is feeling so much better.<br />
Thank you to everyone who kept him in their thoughts and prayers! And thank you to all the medical personel who cared for him along the way!</div>
Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-31990395960575982092013-02-11T10:43:00.001-05:002013-02-11T10:43:16.109-05:00Cards<div dir="ltr" style="text-align: left;" trbidi="on">
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Once again, the wonderful Charla Reardon created a facebook event to ask people to send birthday cards to Ambrose. He received 68 cards. We want to send a special thank you to Kelley Hickey Lynch and the Armata Biance children's rosary group for the fabulous tactile cards they made for Ambrose and for all the prayers over the years! Ambrose really enjoys touching the cards and one day made a huge SMILE while touching one of them!<br /></div>
Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-55272903015648407812013-02-11T10:33:00.001-05:002013-02-11T10:44:26.290-05:00SWEET ANGEL SOPHIA<div dir="ltr" style="text-align: left;" trbidi="on">
Sophia's birthday and the day of her passing have come and gone once more. On January 22, it was 6 years since she left us to become an angel. Everyday we miss her but we feel her presence in our lives, most especially through our darling Ambrose. My husband and I wrote messages on balloons and released them into the sky. My husband was able to do so over Hogback mountain and watch it slowly drift away at the "100 mile view" spot. I released mine in the backyard and am not sure it went so far, but it felt good to do. I'm sure she got the message.<br />
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February 7 was the 10th year anniversary of her birth. 10 years! Wow! How our lives have changed. She was a tiny girl, but the love that radiated off of her filled the whole house. It is hard to remember a time before she was with me. Perhaps because she has always been with me. I miss her so, but am so grateful that we had almost 4 glorious years with her and I know I will one day be with her again.<br />
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Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-29187696039864789482013-01-21T23:18:00.001-05:002013-01-21T23:18:10.975-05:00Ambrose Turned 5! January 19th<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">Ambrose resting up for the party.<br /><br /><h2>
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Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-30683513258618237822013-01-21T23:03:00.001-05:002013-01-22T00:11:11.064-05:00 A Year with 0 Hospitalizations 2012 in Review<div dir="ltr" style="text-align: left;" trbidi="on">
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2012 was a big year for Ambrose. His first major accomplishment was turning four. </div>
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He went out for many walks and had many outings. He attended his Mommy's RN pinning ceremony,</div>
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wemt to church several times, played at the park, went to the apple pie festival, and Santa's Land.</div>
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We were amazed to learn that he, and his sister Sophia, did not have Taybi-Linder Syndrome, as</div>
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previously believed. Their new diagnosis is CDG-1d, Congenital Disorders of Glycosylation type 1D. </div>
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This is also quite rare, but is part of a group of disorders currently being researched in several countries.</div>
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Most importantly, children with this disorder live longer than those with his former diagnosis. I have even been able to connect with another Mother, which is wonderful after all these years of possibly being the only one. </div>
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Ambrose weathered 2 respiratory illnesses at home and has gone a whole calendar year without any hospitalizations. By the end of 2012, it had been over 19 months since his last hospitalization. </div>
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Here are a few photos from Christmas time.</div>
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Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-79989587858018602522012-11-27T10:38:00.002-05:002012-11-27T10:40:29.631-05:00Wonderful visit from Lisa and Carole<div dir="ltr" style="text-align: left;" trbidi="on">
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Two wonderful childhood friends, Lisa and Carole, each traveled 5-6 hrs (from seperate directions) to visit and soak up some Brosie Love. I am so honored to have such friends!</div>
Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com1tag:blogger.com,1999:blog-203617183106568370.post-41748180525988974732012-10-21T18:17:00.000-04:002012-10-21T18:17:36.341-04:00<div dir="ltr" style="text-align: left;" trbidi="on">
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Little Brosie has been sick for the last week. The first photo is taken mid-sneeze.</div>
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He caught a cold from his Daddy, who tried very hard to not expose him to his germs. Ambrose had temperatures up to 103.4. He was requiring more O2 and coughing a lot, having tons of tracheal secretions. We have kept him on his vent most of the time, as we have done each time he is sick.<br />
He has been able to weather all of his respiratory illnesses at home since we have gotten the vent about 2 years and 8 months ago.<br />
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I decided not to call the Doctor this time. They usually put him on an antibiotic "just in case." It just gives him bad diarrhea. Ambrose's Dad and I (who also got sick) got better on our own, so it seem to be a virus. He also had several crying spells, which is awful. Ambrose rarely ever cries, so I think he must be very uncomfortable when he does, and he cannot communicate what is bothering him. It is pretty much the only time he makes any sound, but it is just heartbreaking to hear his cry. <br />
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Ambrose has't had any fevers, or crying spells, in several days and has come down some on his O2, but he is still needing the vent most of the time and needing much suctioning. He has been somewhat playful, but not quite his usual self yet. Hopefully soon! <br />
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Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com1tag:blogger.com,1999:blog-203617183106568370.post-8706356479243643242012-10-12T11:50:00.000-04:002012-10-12T11:51:02.124-04:00Super Duper, Super Dapper, Super Brosie<div dir="ltr" style="text-align: left;" trbidi="on">
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Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-25431609453814449322012-09-28T11:15:00.002-04:002013-05-28T12:05:26.441-04:00Diagnosis: CDG-1d<div dir="ltr" style="text-align: left;" trbidi="on">
Ambrose and Sophia's diagnosis is in: It is CDG Type 1d, also known as ALG3-CDG or CDGS-1d.<br />
There are 2 mutations on the ALG3 gene; one came from me, and one from his father.<br />
He may be case #11. <br />
My genetic counselor gave me this diagnosis over the phone. She said she had a few case studies she<br />
would send me. I asked how old the oldest one was. She said the one case study was about siblings, alive at the time of the report and were 7 and 9 years old. That gave me new hope. I cried tears of joy.<br />
Then, after a quick Google search of CDG-1d, I found a post from a woman in CA from 4 days ago, saying her daughter was just diagnosed with CDG-1d. When I read her post I discovered her daughter was <b>22 years old</b> and doing well! Perhaps she is not as severely affected as Ambrose, but it is wonderful and hopeful news. The average life expectancy with Taybi-Linder was under 1 year. <br />
I will add more later. Just wanted to share this news.</div>
Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-33934138785306319542012-08-24T12:37:00.002-04:002012-08-24T14:09:51.988-04:00Not Taybi-Linder!<div dir="ltr" style="text-align: left;" trbidi="on">
Well I have been waiting for more before posting, but will start with what I have.<br />
I learned a few weeks ago that Ambrose does not have Taybi-Linder Syndrome and instead has something called Congenital Disorders of Glycosylation or CDG. There are many types of CDG and we are waiting to find out which one. This is mind blowing and exciting and scary. I am dying to get the exact diagnosis.<br />
<br />
The way we got here is through the genetic study in Canada. The gene that causes Taybi-Linder syndrome had been discovered. We were asked to participate in a research study about this. (DHMC had stored cord blood from both of my children.) They were found to not have that gene. However, it was believed so strongly that they had this syndrome that they wanted to look more indepth to see if they could find another gene that could cause this syndrome. It was then that I was told that there were 2 other families who had 2 children affected by this syndrome who also tested negative. Unfortunately they had all passed away. This is how I met my dear friend Jenn in Canada.<br />
Then I was contacted to get permission to draw blood from my dear boy to do another test. The results showed that he had two abnormal genes which relate to CDG. I am told that this means this IS the diagnosis. They asked for DNA samples (cheek swabs) from my husband and I to see if one of the gene changes comes from each of us. We just sent those in a few days ago. They are doing a sanger series (or something like that) on Ambrose's genes. I am told that this is an exciting discovery for them. There was a handwritten note on the DNA kits thanking us and saying "you don't know what this means to us."<br />
<br />
For the last nine years of my life, my children had this exceedingly rare, FATAL syndrome. No one knew anything about it or seemed interested. I had not gotten to connect with other parents and at times wondered if they were the only ones in the world to have it. I was haunted by knowing that the longest surviving child to have it only lived to six. A lengthy article was published in the American Journal of Medical Genetics earlier this year about the neurological changes in Taybi-Linder syndrome based on Sophia and Ambrose. (Finally someone was interested thanks to a medical student at Dartmouth.) If you Google "Taybi-Lindre Syndrome" it is the first item, then a few lines down is Ambrose's trach kids profile, then further down are "images for Taybi-Linder syndrome" - all pictures of my children. I clicked the side bar for images and every picture I ever posted to this blog are there. That kind of freaked me out. There were some other kids, but when I clicked on them I saw they were just kids who had profiles on the trach kids website, and must have gotten pulled because Ambrose and Sophia are on there and Taybi-Linder is mentioned. Oops.<br />
<br />
Now on to CDG. There is not an easy way to explain it, nor do I feel I understand it well. It is a neurometabolic disorder, having to do with a malfunction on the cellular level. Unfortunately this can affect every organ or tissue in the body potentially. There are at least 50 different types, many of which have only been identified in a few individuals. It is believed that there are probably hundreds of types. It is an "inborn error of metabolism".<br />
<br />
<b>Glycosylation</b> is a process by which all human cells convert sugars into long chains and attach them to proteins. These are called glycoproteins and are required for normal growth and function of all tissues and organs. This is acomplicated process involving hundreds of steps and specialized enzymes that help along the way. In CDG, one of these enzymes malfunctions. The impact on the body depends on which enzyme is involved.<br />
<span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><br /></span>
Here is a link to more information about this disorder if you are interested:<br />
<span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><a href="http://www.ncbi.nlm.nih.gov/books/NBK1332/" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">www.ncbi.nlm.nih.gov/books/NBK1332/</a></span><br />
<br />
I could not believe this at first, since Sophia's and Ambrose's disorder seems clearly to be a skeletal dysplasia. They were put into the category of MOPD, of which Taybi-Linder is a subtype, because they had microcephaly, along with dwarfism. The more I look (AND THAT IS <b>THE MOST WONDERFUL THING: THERE IS LOTS OF INFORMATION. PEOPLE ARE RESEARCHING THIS, WRITING ARTICLES, THERE ARE TREATMENTS FOR A FEW TYPES, THERE ARE SUPPORT GROUPS, EVEN FACEBOOK PAGES. </b>There are about 1000 people worldwide. That's huge compared to 32 since 1968!) I find that skeletal dysplasia and skeletal abnormalities can be caused by some CDGs. I even found an article specifically addressing that, which concluded by saying that CDG should be considered as a diagnosis in any unusual skeletal dysplasia. Wow!<br />
<br />
I have seen nearly all of Sophia's and Ambrose's issues listed amongst the many different types that I have read about (which is only a fraction of the known types I'm sure) but none have listed all and all have mentioned things they do not have. I saw little mention of respiratory issues, which have always been my children's most serious concern. I saw no mention of trachs or unusual anatomy of the trachea. Perhaps they have an undiscovered type. That would figure. But perhaps knowing the cause of it will make a difference. <br />
<br />
I am hopeful since there is so much info and seeing that there are actually adults with this disorder, but nervous, as there are also types with short life expectancies and new things for me to worry about. This is why I am dying to find out the actual diagnosis. <br />
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Ambrose helping make salsa<br />
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Olympic fever<br />
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Ambrose's gold medals<br />
London 2012 and<br />
Beijing 2008<br />
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Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com1tag:blogger.com,1999:blog-203617183106568370.post-28707880327686170722012-07-19T21:43:00.001-04:002012-07-19T21:43:56.080-04:00Ambrose is 4 1/2 today!<div dir="ltr" style="text-align: left;" trbidi="on">
Today is Ambrose's half birthday! Hooray for my little champ!<br />
I am so proud of him evey second! And I am so grateful to be his<br />
Mommy!<br />
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We had a wonderful nap together this afternoon. Heaven!</div>Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-39494583930386048342012-07-19T15:03:00.000-04:002012-07-19T15:06:05.842-04:00<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">I just made this shirt for Brosie.</td></tr>
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Ambrose just had another ultrasound of his kidneys and appointment with the nephrologist to follow up on his renal calcification. The ultrasound did not look any better and was possibly worse. There is a lot of calcium building up in his kidneys. The diuretics do not seem to be helping him to clear it, although the doctor thinks it might be much worse without them. He wants us to increase Ambrose's free water by 250 mls a day. I am gradually working up to this amount. Also, his potassium is again extremely low at 2.8 (normal range is 3.5-5.0) so his Potassium supplement is increased to 4 times a day. The good news is that his urine calcium is the lowest since they discovered this problem well over a year ago. It was 0.58 (normal is 0.2; his last one was 1.2)<br />
His neurologist and GI doctor were both quite pleased with how he is doing. The neurologist commented, "You're taking such great care of him." </div>Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-10507883220175069482012-07-19T14:54:00.002-04:002012-07-19T14:54:52.382-04:00He keeps biting his tongue<div dir="ltr" style="text-align: left;" trbidi="on">
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<br /></div>Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-90233795157138960382012-07-19T14:50:00.001-04:002012-07-19T14:50:47.540-04:00Potty time!<div dir="ltr" style="text-align: left;" trbidi="on">
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For a long time now, Ambrose waits until a few minutes after waking to pee. I recently got him a<br />
potty seat and put him on it upon waking and it worked! For the next few days, every time I put him on it after he woke up, he peed. Unfortunatly I then noticed he had developed bruises on his bottom and thighs in the areas in contact with the seat. I am giving him time for his bruises to heal and purchased some foam to try to cushion the seat and try again.</div>Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-86724821229788513202012-07-19T14:45:00.001-04:002012-07-19T14:45:05.356-04:00Kindred spirits<div dir="ltr" style="text-align: left;" trbidi="on">
Well I am delighted that one of the moms I became aware of through the genetic study got in touch with me. (A Canadian hospital claimed to have found the gene that causes Taybi-Linder Syndrome and our genetics department got us involved in this study. The results were that Ambrose did not have this gene but it is believed that he has this syndrome and that there may be another gene that can cause it as well. Later we were contacted again because this study identified 2 other families who have also had 2 affected children who also tested negative for this gene and they wanted permission to do a more indepth genetic analysis. I was so excited to hear that there are others, and asked for my contact information to be sent to these other families.)<br />
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My new friend lives in Canada and has lost two darling boys with this syndrome. Tragically their lives were extremely short and the second died only a month ago. My heart breaks for her, but we are both so happy to be in touch. I hope that I can be a support for her. She is a wonderful mother!<br />
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We have found so many striking similarities between our children. (There are so few cases ever reported that the information is so limited. There are many distinctive features that Sophia and Ambrose both share but I never knew if they were common to this syndrome.) Some very specific details that all of our children share are: index fingers that cross over the middle finger, the last joint of the pinkies are bent at 90 degree angles, they have high vaulted narrow palates, and most significantly: unusual anatomy of their tracheas. I have never seen this mentioned in any literature and it is so very important as it contributed to her children's death and has caused many episodes of respiratory distress in Ambrose before they finally figured out an appropriate custom made trach tube.</div>Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0tag:blogger.com,1999:blog-203617183106568370.post-86638990546511956822012-07-19T14:24:00.001-04:002012-07-19T15:05:13.285-04:00Ambrose feeling better<div dir="ltr" style="text-align: left;" trbidi="on">
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Well it has been a long haul. He started to get better, then had some more fevers. He did not need to be on the vent during the day, but he still had such copius secretions. Ambrose was sick for about a month but was able to beat this thing at home! It was likely a virus. but two different antibiotics were tried "just in case", which reaked havoc on his system. He is not quite back to his baseline O2 but he is so much better.</div>Ambrosehttp://www.blogger.com/profile/18393226510355878196noreply@blogger.com0