Ambrose has been on many outings this spring: Church, the park, and lots of walks. Then it got hot....
Sunday, June 24, 2012
Outdoor Fun with Ambrose
Ambrose has been on many outings this spring: Church, the park, and lots of walks. Then it got hot....
Wednesday, May 9, 2012
Update
Ambrose has had a very nice spring with lots of walks, playing, and of course endless cuddles.
He recently attended my ADN pinning ceremony and I think I can say he was the most popular person there. He got lots of attention from my fellow graduates.
Ambrose has been healthy! He continues to have issues with renal calcification and periods of hypokalemia, but they don't seem to effect him. He had a follow up ultrasound of his kidneys at the end of January, which showed no change since the previous one 6 months earlier. He has been on 2 diuretics to try to flush out the calcium he is retaining in his kidneys. They increased the diuretics to twice a day, which of course, caused his potassium level to drop. Many labs and dosage adjustements later, after his potassium level stabilized, they raised the diuretics again.
He has also started having more seizures after a long, relatively seizure free period. His Lamictal was increased, and the seizures increased along with it. He does his own thing.
Ambrose's GI doctor came to the conclusion, ongoing struggles with acid burns around his G-tube, that his stomach lining has grown up into the tract of the G-tube. When this happens, it does not have a tight fit and is very prone to leaking. The only solution is putting in a new hole. We are not pursuing that at this time. We attend to it many times a day, have tried many different ointments, and are right now trying "Tubie Woobies," cute fabric pads, made by a Mom of a child with a G-tube, to absorb drainage.
Ambrose lost his 7th tooth while at the dentist. (Unintentionally) He has 4 new ones coming in on the bottom, the middle two of which are very tiny, odd, and sharp. See below. (His lips are not always that dry).
Another interesting this that has happened was that we were contacted about a study at Alberta Children's hospital. They claim to have found the gene that causes Taybi-Linder syndrome. DHMC stored cord blood on both Sophia and Ambrose. We consented to the study and the result was that he did not have the gene. They still feel that he has Taybi-Linder and I learned that sometimes there can be more than one gene that causes the same syndrome. A couple of months later I was contacted again. It seems that this study also fould another family who has had two children (unfortunately both of whom have passed away) who had Taybi-Linder and also tested negative for the gene, and another family who lost one child and is pregnant with another affected child. They wanted permission to do a more in depth genome analysis to try to find the other gene. I said," fine, but most importantly, how can you get me in touch with these other parents?" I have never had contact with anyone else with children with Taybi-Linder. I asked her to pass along my contact information and this blog address to those parents. I am so hoping they will contact me.
I was also contacted by a lovely oyung woman in Paris who was pregnant with a son who was identified as having some kind of genetic syndrome. In researching online, she came across this blog. She said it inspired her to see how happy and loved Ambrose is. Her son was born and is doing well. He does not have Taybi-Linder syndrome. :)
He recently attended my ADN pinning ceremony and I think I can say he was the most popular person there. He got lots of attention from my fellow graduates.
Ambrose has been healthy! He continues to have issues with renal calcification and periods of hypokalemia, but they don't seem to effect him. He had a follow up ultrasound of his kidneys at the end of January, which showed no change since the previous one 6 months earlier. He has been on 2 diuretics to try to flush out the calcium he is retaining in his kidneys. They increased the diuretics to twice a day, which of course, caused his potassium level to drop. Many labs and dosage adjustements later, after his potassium level stabilized, they raised the diuretics again.
He has also started having more seizures after a long, relatively seizure free period. His Lamictal was increased, and the seizures increased along with it. He does his own thing.
Ambrose's GI doctor came to the conclusion, ongoing struggles with acid burns around his G-tube, that his stomach lining has grown up into the tract of the G-tube. When this happens, it does not have a tight fit and is very prone to leaking. The only solution is putting in a new hole. We are not pursuing that at this time. We attend to it many times a day, have tried many different ointments, and are right now trying "Tubie Woobies," cute fabric pads, made by a Mom of a child with a G-tube, to absorb drainage.
Ambrose lost his 7th tooth while at the dentist. (Unintentionally) He has 4 new ones coming in on the bottom, the middle two of which are very tiny, odd, and sharp. See below. (His lips are not always that dry).
Another interesting this that has happened was that we were contacted about a study at Alberta Children's hospital. They claim to have found the gene that causes Taybi-Linder syndrome. DHMC stored cord blood on both Sophia and Ambrose. We consented to the study and the result was that he did not have the gene. They still feel that he has Taybi-Linder and I learned that sometimes there can be more than one gene that causes the same syndrome. A couple of months later I was contacted again. It seems that this study also fould another family who has had two children (unfortunately both of whom have passed away) who had Taybi-Linder and also tested negative for the gene, and another family who lost one child and is pregnant with another affected child. They wanted permission to do a more in depth genome analysis to try to find the other gene. I said," fine, but most importantly, how can you get me in touch with these other parents?" I have never had contact with anyone else with children with Taybi-Linder. I asked her to pass along my contact information and this blog address to those parents. I am so hoping they will contact me.
I was also contacted by a lovely oyung woman in Paris who was pregnant with a son who was identified as having some kind of genetic syndrome. In researching online, she came across this blog. She said it inspired her to see how happy and loved Ambrose is. Her son was born and is doing well. He does not have Taybi-Linder syndrome. :)
Tuesday, April 24, 2012
At Long Last...
Update coming soon
I just spent a long time typing in a lengthy update. Then Safari "quit unexpectedly" before I finished and I lost the whole thing. I don't have the energy to retype the whole thing now. :(
Keep scrolling for lots more pictures.
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| My Wonderful Valentine |
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| Max & Diana working with Sophia |
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| Max & Diana with Ambrose |
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| OT, PT |
Saturday, January 21, 2012
AMBROSE IS 4!!!!
On January 19, 2012, Ambrose James Brown turned 4 years old amid much fanfare!A friend and her sister created a facebook page encouraging people to send a birthday card to Ambrose. We received so many wonderful cards, including many handmade cards from children, which were our favorites. It was so heartwarming to receive such an outpouring of love, especially from people we don't even know. Ambrose touches everyone who knows of him! I am so grateful for him and honored and blessed to be his Mommy!
Thursday, January 12, 2012
2012
I had a wonderful time with Ambrose over my Christmas break from school. Ambrose's grandpa visited. He has been feeling pretty well, but we are still chasing his Potassium levels trying to find just the right dose. His last level was 3.3, low again. He is having some occasional unexplained desats. I suspect it may be his positional airway. He has a custom angled trach and it has been nearly 2 years since the design has been modified. It may be time as he has grown quite a bit. He is now 32.5" tall. He will be seeing his ENT dr, as well as several others at the end of January. The ENT dr will scope his trach and see if it is still fitting well.
Ambrose decided to ring in the new year by tumbling out of his tumbleform chair. (His first fall.) He has scholeosis and leans to the left. I never used a seatbelt in his tumbleform. I didn't think he could get out of it due to its contoured shape and his limited movement. Well, surprise. I had my back turned and heard a thud. There he was lying face down on the carpet. I think he just leaned more and more into his curve as he seemed to have fallen out the side. Fortunately, he did not get hurt. He had a surprised look on his face. I immediately scooped him up and covered him with kisses. He cried about 15 minutes later for a few minutes and that was all. I feel so bad and have been strapping him in ever since.
On January 2nd, he became older than Sweet Angel Sophia, who died 19 days shy of her 4th birthday. Ambrose will be 4 on January 19, 2012. Exciting and scary. I believe Sophia had been the 5th longest surviving child with Taybi-Linder Syndrome, so turning 4 is huge!
On January 2nd, he became older than Sweet Angel Sophia, who died 19 days shy of her 4th birthday. Ambrose will be 4 on January 19, 2012. Exciting and scary. I believe Sophia had been the 5th longest surviving child with Taybi-Linder Syndrome, so turning 4 is huge!
Sunday, December 25, 2011
Friday, December 9, 2011
My Gorgeous Boy
Brosie is doing well. One week after Potassium supplementation, his Potassium level only rose from 2.6 to 2.8. (normal is 3.5-5.0) They increased the dose and his level rose to 4.3 after one more week. Yeah! Now I am a little nervous about it continuing to rise this quickly and becoming too high, which is not a good thing either. I am pleased to report that he has been having only a couple of seizures a day the last week. (down from 8-10 a day) There is not supposed to be a connection between potassium and seizures, but it's quite a coincidence.
Ambrose's nurse Meghan was inspired to do a Christmas photo shoot and Amborse was a great (and very patient) model!
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