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God delights in using ordinary people in ordinary places, to do extraordinary things in very extraordinary ways.
Journal
Wednesday, December 17, 2003 1:50 PM CST Happy Holidays............
I know, It's about time you say? Yes, I say sorry AGAIN !!
Now I have to try and test my memory so far back in the dark ages.
Contrary to what I've heard, I did not have a very easy time of taking care of a body cast. First of all, Dalton is not potty trained....yet. And trying to keep it dry while he was still so swollen was not an easy task.
It was difficult to keep him propped up in a comfortable position in a cast that is directly under the rib cage. And a crooked one at that. Due to his scholiosis and gibbus, his rib cage protrudes on the left. So when we would rotate him from side to side, as necessary to avoid sores, we had to do so on a flat level as opposed to an upright position because it was very uncomfortable for him. Thus when he peed it would only go up towards the abdomen and not down into the diaper. Which ultimately ended up on the inside of the cast making it wet. When that happens, you have a soggy, smelly mess. So each time that happened I had to remove tape and casting material and replace it with dry sterile tape and material. That is after I took a hair dryer for 30 minutes or more to dry out the fabric against Dalton's skin. If I didn't he could have some pretty badly burned skin and irritation from the urine. This went on for about 4 weeks or so until the swelling went down. This was good. Then it became easier to push the diaper inbetween him and the cast from the front and back. It was a rough 4 weeks.
Most of the time Dalton spent his days watching Sesame Street, Bear, Caillou and Blues Clues videos. Some time at therapy for OT,SP and some light PT for strength in his arms. You really can't do much when you're not walking. He did a great job of it too. I really thought he'd be angry and frustrated. But he wasn't. He accepted it just like everything else that's happened to him. Like a trooper. He amazes us everyday.
His surgery took place on June 3rd, his cast came off on July 17th, and he started scooting aroung on his bottom a few weeks after that. He began to put weight on his legs in early August and we gave him a walker which he denied and just took off holding onto walls or whatever was handy to get around the house. I'd have to say he was walking pretty well by mid September and increased through November. It by no means was a normal gait, he walked with a wobble teetering back and forth on each leg and just kept progressing each week. He was turning out his left foot alot still in November, but over the last weeks his muscles have been developing and it's better. He seems to still do this on occassion. Especially when he's tired or doesn't feel good.
Just last Thursday the 11th, we had another x-ray done and the local doc described a great healing process. So the job, of course by Dr.Ogilvie, was done well and Dalton's body accepted it and healed very well.
Now we're back to school everyday from 1p-3:30p and therapy Mon,Wed,Fri. He really has become a pretty good socialite.
As far as his yearly check up goes.... Dr.Shapiro is concerned with his attention. She reccommended medication. Dr.Charnas wants to wait and see if he'll get better with age. Let me tell you.......... he is at the terrible 3 stage. And do I mean terrible. It's another change for me too because I have to learn MORE patience. Dr.Petryk was very nice she is the endochrinologist (sp) on board. All is well there with his bone density and thyroid etc...... And Dr.Braunlin gave us a rave review. We didn't have to see Dr. Vanheest this time nor Dr.Regalman. We did however meet with Dr.Rimmel, he's the ENT doc. Dalton has been having a sinus infection every month and the antibiotics will soon not affect him anymore. We discovered that Dalton actually has rhinositus more than sinusitis due to such small nasal passages. He suggested that as a last resort that he undergo surgery to widen those passages. Well since May Dalton has had his adnoids taken out and a third set of PE tubes put in his ears to see if this would help. The only thing it's managed to do is lengthen the time period between the infections. He just finished a round of Vantin last Friday and I still don't think he's completely over this sinus infetion. So... if he gets another one, even after I've purchased a humidifier and using his rhinocort and flonase, I will be sure to contact his doc and possibly his local ENT for a NEW plan. You know us BMT mom's we don't wait too long before we start trouble!!!!!
We refused to see Dr.Christiansen because he tends to give Dalton too much of a change in his lenses. Each time we've gotten the new pair of glasses, Dalton ends of not wearing them and we've discovered with the help of his local optho that the power is too high. So we ultimately end up with his old perscription. Besides, when you go to see Christiansen, it takes a minimum of 3hrs and in particular, one of the nurses there really needs to retire. So why put Dalton and us through all that when it ends up badly anyway.
Dr.Shapiro is concerned with Dalton's behavior in attention. That is to say that he doesn't pay attention. She reccommended med therapy, but between our local Ped's doc and other therapists, his teacher and Dr.Charnas, we all agree that it's possible over time Dalton will grow out of the terrible 3 stage and start "wanting" to pay attention. Plus with each individual, there is always something that will motivate them. Finding it, is the catch. However, since Dalton is attending special ed pre-school with transients and a few other special ed children, it will encourage and give him examples of how to behave and learn.
And when you look back at all this, this is the very first ~real~ school setting he's ever been in. He's only been going since November so he has alot of opportunity before the end of the school year.
An excellent tip I recieved from Dalton's OT was this... "You have to compare Dalton's learning level to the level of other children his age. Is it the same or more severe?" It's been the best tool I've ever gotten. Because let me tell you guys..... Dalton is in the terrible 3 stage big time. And I really thought something was wrong. Our Peds doc said .... This is something normal... normal, what's that? Don't give me normal, I can't handle that!! You know what I mean? Of course I can handle it, but I have to really have to teach myself.
Dalton and I are learning how to be teacher and student instead of mom and child. His school SP sends home homework. I think the most time we've spent on his workbook is 10 minutes tops.It's difficult on both of us. But I'm sure once we get into a routine, it will get better. So during this holiday break we'll get to it.
Dalton has begun seeing a local dentist that specializes in special needs children. He's been twice and hates every minute of it. He looks like he has the measels by the time it's all over.(from crying). They are very mild mannered and gentle. It's just the fact that they have to hold him to clean and examine his teeth that he just can't stand.I hope it will get better. Otherwise, when they have to do x-rays and such, I'm sure they'll have to sedate him.
I think that pretty much covers little man.
As for me, I have joined a wonderful church and became a member of the choir. So I get to worship every Wednesday and Sunday in song. I also attend Sunday school class and I've met some wonderful life long friends in Christ. Dalton has definitely changed my life in more ways than one.
Dean is still working away managing the hospital expansion.He works 7 days a week and tries to fit in some golf when he can. He's our hero! He takes great care of all of us. Including my parents. He's been my stability and I'm so thankful for him.
Well Dalton's Christmas tree is up and he's waiting for Santa so he can open up those presents under there! He still doesn't have the Santa, Christmas concept. But he does know that when there's a tree, he gets to open up presents.
We hope you all have a very Merry Christmas and a Happy Happy New Year!
Dean,Kym and Dalton
Torgler
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