Friday, July 20, 2007
Friday, June 15, 2007
Max's Surgery
Max had his palate repair surgery on June 1st. The staff in the PICU did an excellent job keeping Max's pain level tolerable. You could tell he did have some discomfort but that of course is expected. I stayed at the hospital with the exception of going to the hotel room to shower a couple of times.
The sleeping accommodations at the hospital are not the most comfortable to say the least, but it's a place to lay your head down. The chairs pulled out into beds that were more like boards. Not the best situation for someone with my back problems but at least I could be with my little guy.The staff would provide me with sheets, a pillow and blanket.
The staff was always asking if we needed anything and were very attentive.
Max was doing very well but then developed a reaction to the antibiotics. I discontinued them as it was on a Friday evening and I was unable to contact the Dr.s office. I called them on Monday and they said just to D/C it and see how things go.
A few days before his post op appointment his palate repair opened right in the middle where the cleft was the widest. This is not an unusual thing and with moderate to severe clefts (Max's was/is moderate) it sometimes happens. Max's Dr. said it will sometimes close on it's own in time. We are to see him again at the end of July and if it is not closing, he will repair it at the same time as the lip to minimize the amount of times he has surgery. It wasn't done like that initially because it would have been very difficult not to stretch out the lip while doing the repair that Max needed done.
Max also had a tube placed in his right ear for drainage of fluid that frequently accumulates in children born with clefts. His left ear was diagnosed with microtia with atresia which basically means he doesn't have a patent ear canal in that ear. Most patients with one sided microtia leave things alone as long as the hearing in the other ear is good. Max has excellent hearing in his right ear and did even prior to the tube placement. The specialists will continue to follow him and his progress.
He will be evaluated by a local speech therapist next Thursday after which they will decide a plan according to his needs. They will come to our home and give him therapy but I'm unsure how often. Sometimes they come in once a week sometimes more, depending on the needs of the client. Max is already saying a few words but it's difficult for others to understand him like we do. I think he has made big strides since his "Gotcha" day.
I hope this doesn't come acrossed as bragging or boasting but we truely feel so blessed to have our beautiful kids. They are so lovable and smart and we just couldn't imagine our lives without them. We have been given the greatest gift in the world, the gift of life. They make our life complete.
Tuesday, May 22, 2007
May 31st...1 more day until Max's palate surgery!!!
The surgery will take place on Friday June 1st, just one more day! We brought him for his pre op testing on May 24th. Max will be hospitalized for 3-5 days for the surgery. His diet, as you would expect, will consist of mostly clear liquids, then full liquids. His diet will progress along with the healing of the palate.
I'm pretty nervous about his surgery but I know he is in great hands. Everyone that knows Max's doctor says he is excellent as well as the other specialists that are part of the team.
I will stay with Max and Dan and Sonja will sleep at the hotel. I might get one night at the hotel if all goes well but we will see (that is, if Dan stays with Max). Max usually sleeps like a log and doesn't stir at all at night. I'm hoping that is the case in the hospital. As long as he gets good pain control, hydration and nutrition he will be just fine. I'm unsure of where I will be sleeping. I'm hoping that they will have a bed or a cardiac chair (which is like a recliner) that I can sleep in but I guess beggers can't be choosers. If I am lucky enough to get a bed, I will be golden!
Dr. Tatum, Max's facial plastic surgeon, said Max will be medicated enough to make him cranky yet fairly comfortable but not so much as to decrease his respirations the first day. The hope is that he will be comfortable enough to take fluids via the Soft sipp cup or other method. It is important that whatever method is used, Max doesn't have to suck as that can damage the surgically repaired palate
His lip repair will take place in the future and that will be determined at a later date. If the repair of the lip and palate were to take place at the same time, the lip would stretch and rip and therefore, surgery would be useless. The decision to repair the palate first is due to his age. The specialists and I both think the speech is the most important issue at present. Bad habits forming words and sounds can be difficult to change if left uncorrected.
Max seems to have a fairly high pain tolerance/threshold. He has had some squabbles with Sonja and has been at the receiving end of one of Sonja's heel strikes to the back of his head! He just turned his head to the left like "what was that" kind of gesture.
Max will be having a speech therapist come to our home as soon as possible after his surgery. I have spoke with the head of Early Intervention and he will be coming to our home the day before the surgery. Due to him having a cleft lip/palate, he automatically qualifies for speech therapy through Early Intervention. They will be coming into our home and starting speech therapy with Max right after his surgery. The sooner, the better.
I have been teaching Max sign language. He loves to mimic so he is learning fairly quickly, especially food signs (of course). He also know the signs for "all gone" "apple" "cookie" "drink" and "eat". I found that when I taught Sonja sign language, it seemed to decrease the amount of anxiety she expressed due to her limited vocabulary. I have also read that it may help children learn to speak faster! Sonja spoke a few words in English when we received her (at 10 1/2 months), hot, up, mama and baba. She is now 2 1/2 and has an excellent vocabulary and articulates very well! Maybe there is something to those stories or maybe she was going to do well anyway. In any event, I don't think it can hurt.
We are all doing very well and are keeping busy. We are having lots of fun and adjusting to "family of four" life.
Life truly is good!
Could you please say a few prayers for Max?
I hope you are enjoying following the blog and continue to.
Love to all!
Above, Sonja poses for a pic while washing her female doggie "Hanky". What....don't tell me you've never heard of a girl named Hanky?
Sonja giving Max's turtle "Sheldon" a bath while Max smiles for the camera.

" I'm such a good little girl!"
"I'm sing-ing in my spoon... just sing-ing in my spoon...."
Mmmuuuuwwaaaaahhhh!!!!!
The kids love playing in the backyard (that is when you can drag Sonja away from the T.V.). The sandbox and the slides are their favorite things. They also love to ride in Dan's utility wagon/trailor.
Although Max just learned how to walk, he is making up for lost time. He is climbing up and down stairs, trying to run and trying to ride a tricycle. He is a very determined and strong little guy.
I think if Max could articulate more he may be saying "I can do it, I can do it!"



Max relaxing with Daddy on the swing.
Sonja hiding from her brother.
Max and Daddy on the top walkway at "Kids Kingdom"

Our cutie patooties!

We recently went to the Shrine Circus that was visiting our city. The kids had fun watching the show. Max had eyes as big as saucers when he saw the elephants. I was holding him so I was unable to get at picture of him. It was held later in the evening and was close to Max's bedtime so he was not the best candidate for a ride on the elephant. Above, Dan and Sonja are on the back end of the elephant going for a ride.
Thursday, May 10, 2007
International Orphans
Please watch this video. If you wish to add to your family, please think about adoption. If you can't adopt, think, pray and give to charities that help support these beautiful children. These children are all our children.
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