Well today was supposed to be our 2 week follow-up visit at Children's. Unfortunately, another storm is blasting our area with sleet, snow and ice. SNOW DAY! I called the clinic, gave them an update on how Ethan is doing and they gave me the ok to come next week instead. I emailed their clinical coordinator a couple of photos of his palate. I had them posted here but my sister pointed out that Ethan maybe wouldn't appreciate me showing everyone his mouth one day. So if anyone who has a child needing this surgery and would like to see before and after pictures I would be happy to share them.
Ethan is sleeping much better now (thanks to nonna's blankie) and the splints will remain on for another week. I can take them off for short periods during the day. They are allowing us to feed him soft foods as well. We are hopeful that Ethan's incisions will fully heal in the next couple of weeks, thanks for all your prayers!
I will use this blog to give updates to friends and family if Ethan is going to need further surgery in 3-6 months. Thanks for following his progress and we are very grateful for your support. Happy holidays and best wishes for the New Year!
Thursday, December 13, 2007
Friday, December 7, 2007
Update
We are just over a week post-op and Ethan is doing really well. The first week home was hard on him, during the night he never slept more than 2 hours in a stretch. He would wake up crying and even when he was sleeping he seemed aggitated, constantly flipping over in his crib. He spent a lot of time sleeping in our arms the first few nights, but once his pain subsided I tried very hard to get him back in his crib. Basically I pulled his crib up against the bed and tried to comfort him without always picking him up. When I was about ready to give up from exhaustion, Ethan started sleeping for longer stretches of time.
No one who saw Ethan during the day would think anything was wrong. He has been playful and happy with the exception of the first couple of days post-op. For the first week home we mainly fed him formula. Now we are feeding him things like watered down pudding, yogurt, cream soup & pureed baby foods.
Ethan is able to crawl and furniture walk despite the splints. He also doesn't have trouble playing with most toys.
Ethan is always happy during the day, nights are a different story.
Ethan at his 1 week follow up visit with Dr.Jiang. We are very fortunate to have a great surgeon!
No one who saw Ethan during the day would think anything was wrong. He has been playful and happy with the exception of the first couple of days post-op. For the first week home we mainly fed him formula. Now we are feeding him things like watered down pudding, yogurt, cream soup & pureed baby foods.
Ethan is able to crawl and furniture walk despite the splints. He also doesn't have trouble playing with most toys.
Ethan is always happy during the day, nights are a different story.
Ethan at his 1 week follow up visit with Dr.Jiang. We are very fortunate to have a great surgeon!
Friday, November 30, 2007
Ethan's home after surgery
Getting ready to leave for Pittsburgh at 6am.
Just before going into surgery, a little nervous.
Not feeling very well after waking up post-op.
Patrick settles Ethan in the rocker.
Ready to go home after tubes and IV's taken out, not a happy camper!
Hello everyone. We are glad to be home earlier than expected from Pittsburgh Children's. Ethan had his palate repair on Wed, Nov 28th and we expected to stay at least 2 nights. But less than 24 hours after surgery he was drinking apple juice so well they let us take him home on Thurs! His first night out of surgery was really hard for Ethan. Once we got to the floor, the nurse alternated his pain medication and we rocked him to sleep with his favorite blanket. His heart rate came down and he didn't have any breathing problems overnight.
Ethan's surgery went well, his tubes were placed first and then Dr. Jiang closed his palate, although not in the technique he hoped to use due to his wide gap. Although he was able to close it, he was not able to elongate the palate as he normally would. This can affect his speech and he feels that he may have to redo his palate repair in 3-6 months. The good thing is that now that he has it closed, enough tissue will be available once everything heals to close his palate in the preferred method.
Now that we are home, we are getting more sleep and Ethan is adapting to the splints. When I pick him up the first thing he does is rub his face against my shirt, he has an itchy nose he can't scratch, very frustrating! Today is Friday and we are allowed to start formula, that should make him happier, he must be so hungry!
Just before going into surgery, a little nervous.
Not feeling very well after waking up post-op.
Patrick settles Ethan in the rocker.
Ready to go home after tubes and IV's taken out, not a happy camper!
Hello everyone. We are glad to be home earlier than expected from Pittsburgh Children's. Ethan had his palate repair on Wed, Nov 28th and we expected to stay at least 2 nights. But less than 24 hours after surgery he was drinking apple juice so well they let us take him home on Thurs! His first night out of surgery was really hard for Ethan. Once we got to the floor, the nurse alternated his pain medication and we rocked him to sleep with his favorite blanket. His heart rate came down and he didn't have any breathing problems overnight.
Ethan's surgery went well, his tubes were placed first and then Dr. Jiang closed his palate, although not in the technique he hoped to use due to his wide gap. Although he was able to close it, he was not able to elongate the palate as he normally would. This can affect his speech and he feels that he may have to redo his palate repair in 3-6 months. The good thing is that now that he has it closed, enough tissue will be available once everything heals to close his palate in the preferred method.
Now that we are home, we are getting more sleep and Ethan is adapting to the splints. When I pick him up the first thing he does is rub his face against my shirt, he has an itchy nose he can't scratch, very frustrating! Today is Friday and we are allowed to start formula, that should make him happier, he must be so hungry!
Wednesday, October 31, 2007
Halloween Night!
Happy Halloween! Liam & Nyla had their halloween parties at school today. Our friend Laura made Nyla's beautiful costume, it looked great!
The kids were hot, cranky and tired but we couldn't go out trick or treating without getting a picture first! Halloween is fun for the kids, not so much for the adults!
I probably won't post until the beginning of December (hopefully we will be home and Ethan will be recovering from surgery by then). Ethan's weight is almost 23 lbs now and he is developing well, especially those pilates 'core' muscles. We are just going to focus on making him healthy and strong before surgery.
The kids were hot, cranky and tired but we couldn't go out trick or treating without getting a picture first! Halloween is fun for the kids, not so much for the adults!
I probably won't post until the beginning of December (hopefully we will be home and Ethan will be recovering from surgery by then). Ethan's weight is almost 23 lbs now and he is developing well, especially those pilates 'core' muscles. We are just going to focus on making him healthy and strong before surgery.
Friday, October 26, 2007
Pre-op visit
Staying overnight in Pittsburgh, the kids go crazy in the hotel.
Ethan working with a PT on gross motor skills. He also has a speech therapist.
Ethan's pre-op visit to Children's hospital went well. We signed consents for tubes to be placed in his ears and for the palate repair on November 28th. We met again with Dr. Jiang and other members of the cleft clinic, labs were done before we left. They are still not sure if his palate repair will take 1 or 2 stages, they are going to try for one. In Dr.Jiang's notes they describe his cleft palate as "very, very wide". Stage 2 would take place 3 months after the first surgery if needed.
Only his palate will be repaired, not his nose or his gumline (where your teeth sit). Those procedures will wait until Ethan is 6-8 years old. The urgency in getting the palate repaired is so that he can begin to talk.
A little time for reflection:
Ethan has been our son for only 2 months now and so much has happened in that short time. He is a different child than the shy baby they brought to the adoption registration office in Jiangsu. But, in many ways he is the same child only with more energy and weight. Our first days home were really rough and he didn't seem interested in exploring his new house, most likely because he didn't know it was home. Once he left the orphanage, the only home he knew, we moved him into 3 different hotels rooms and 3 different beds before arriving here. What a terrifying experience that must be for a child. I complain about my lack of sleep, yet he has traveled half way around the world with people who look, smell and talk different than his caretakers, basically learning to trust complete strangers. With all things considered I think he is doing very well and I need to remember that when he cries EVERY time I leave a room!
Ethan working with a PT on gross motor skills. He also has a speech therapist.
Ethan's pre-op visit to Children's hospital went well. We signed consents for tubes to be placed in his ears and for the palate repair on November 28th. We met again with Dr. Jiang and other members of the cleft clinic, labs were done before we left. They are still not sure if his palate repair will take 1 or 2 stages, they are going to try for one. In Dr.Jiang's notes they describe his cleft palate as "very, very wide". Stage 2 would take place 3 months after the first surgery if needed.
Only his palate will be repaired, not his nose or his gumline (where your teeth sit). Those procedures will wait until Ethan is 6-8 years old. The urgency in getting the palate repaired is so that he can begin to talk.
A little time for reflection:
Ethan has been our son for only 2 months now and so much has happened in that short time. He is a different child than the shy baby they brought to the adoption registration office in Jiangsu. But, in many ways he is the same child only with more energy and weight. Our first days home were really rough and he didn't seem interested in exploring his new house, most likely because he didn't know it was home. Once he left the orphanage, the only home he knew, we moved him into 3 different hotels rooms and 3 different beds before arriving here. What a terrifying experience that must be for a child. I complain about my lack of sleep, yet he has traveled half way around the world with people who look, smell and talk different than his caretakers, basically learning to trust complete strangers. With all things considered I think he is doing very well and I need to remember that when he cries EVERY time I leave a room!
Friday, October 12, 2007
Hives, cough, nosebleeds, etc
We have had a busy week at home with the kids and different illnesses. Nyla broke out in hives last Friday at 5pm, at the same time Liam was calling me from the bathroom where he was having diarrhea and thought he might throw up. I was trying to get him a bucket and get Nyla benedryl while Ethan was crying at my feet to eat supper.
This is a snapshot of my life with 3 kids, & for some reason everything falls apart between the hours of 4-6pm. I am sure many of you know how this feels! By the time Patrick comes home from work he is wondering what all the fuss was about since everyone looks fine!
Ethan is doing very well. 2 weeks ago he started pulling himself up to sit and stand. I will post a picture of him standing in his crib. About 1 week ago he said his first word in sign language - "eat"! It is amazing how quickly he is learning these skills. Nyla tells him she loves him & gives hugs about 20 times a day except when he bites her (a problem we are working on) and then she says "bad Efan". Liam came home from China not very happy about this new boy in the house, but I think he now likes having a roomie & brother even though he doesn't like to admit it.
This is a snapshot of my life with 3 kids, & for some reason everything falls apart between the hours of 4-6pm. I am sure many of you know how this feels! By the time Patrick comes home from work he is wondering what all the fuss was about since everyone looks fine!
Ethan is doing very well. 2 weeks ago he started pulling himself up to sit and stand. I will post a picture of him standing in his crib. About 1 week ago he said his first word in sign language - "eat"! It is amazing how quickly he is learning these skills. Nyla tells him she loves him & gives hugs about 20 times a day except when he bites her (a problem we are working on) and then she says "bad Efan". Liam came home from China not very happy about this new boy in the house, but I think he now likes having a roomie & brother even though he doesn't like to admit it.
Thursday, October 4, 2007
Busy days
I am sorry I have not been very consistent with posts on the blog. I wanted to just write a quick note today to say Ethan is doing really well and getting big. On 9/13 he weighed 19.5 lbs at his checkup in Warren to start his immunizations. Despite having an ear infection after this appointment, his weight was up to 21 lbs on 10/3/07. We definitely feel the extra weight when we carry him around. Ethan loves mushed fruit, yogurt and pudding, but he is snubbing his nose at everything else. We think he has a definite sweet tooth.
Every day feels like it flies by. I want to stop and enjoy this time I have with young kids but there is always so much to do (Nyla is due to be picked up in a few minutes). I will post a couple of recent pictures of the kids. Nyla and Ethan just before her field trip to the apple cider farm and Liam in goal at soccer.
Thanks for all the well wishes, everyone have been so supportive and helpful. We really appreciate all the love!
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