Trinity had her checkup last Monday with her Orthopedic Surgeon. They did some x-rays in her new brace and found that it is not helping with her scoliosis and that they feel like her spine is getting stiff and unable to be flexible. On Wednesday they had a conference with all the Spine doctors at Gillette and are requesting that they do some more x-rays and some traction x-rays. Some of these will help them determine how flexible her spine is. As of right now the plan is to do growing rods or a VEPTR in July or August. They are being considerate of the new baby coming, but also letting us know that it can't wait much longer. Her curve is about 70-80 degrees and for as young as she is and petite, this is not a real common surgery for someone like Trinity. Shannon and I could really use everyone's prayers!!! This is very hard for us to digest and to know what is right for Trinity. This would be something permanent in her body until she is old enough to do a spinal fusion. With how small she is it is hard for us to wrap our heads around her having these rods in her body and what does that mean for her; pain, breaking of her bones, etc... I have been doing a lot of research online, but nothing seems to be helping us determine what is right for her. She needs something done because this can't go much further, but it is hard to think of surgery again. If you know of someone that has a child as young as Trinity with growing rods or the VEPTR please put them in contact with me. I would love to talk to someone that has been down this road and to know what life looks like for them after the surgery.
We will be sure to let you know how the x-rays go and if there is any other decisions that the doctors make regarding her scoliosis.
Thanks for the prayers!
Wednesday, April 20, 2011
Tuesday, April 5, 2011
Many Updates!
Happy Spring!! I wish I meant that, but unfortunately it is still cold here and we still have some snow on the ground, but hopefully the fun, warm weather is just around the corner.
Lots of new things have been going on with Trinity. She had her teeth cleaned for the first time and it went great. They had to put her under for the procedure because of her vomiting, but her teeth came out looking nice and clean with no cavities or rotted teeth. This was a huge relief, we really thought her teeth were bad because of all the vomiting she does and we can never get a toothbrush in her mouth long enough to be effective.
On St. Patricks day Trinity got her new TLSO (brace). It is really uncomfortable for her, but because her scoliosis is getting so bad we have to do something to prolong any surgeries. She has done really well tolerating it.
They have also switched Trinity's formula to EleCare. This is a hypoallergenic medical food to help with the food allergy they think she has to the Pediasure. Unfortunately she will not take this through the bottle orally so without the bottle she really don't get anything orally. This has been really discouraging coming on a year of her having the G-Tube in July, we really thought we would have made some progress by now with her eating, but instead we have gone downhill. This is something we could really use some prayers on!
We had the pleasure of spending last week in Iowa with our family. It was really nice to be with them and nice to have Shannon there with us for the whole week. The weather was pretty good and the girls always love being with their grandparents! Now we are preparing for the baby to arrive in May. Hard to believe it is getting that close!
Lots of new things have been going on with Trinity. She had her teeth cleaned for the first time and it went great. They had to put her under for the procedure because of her vomiting, but her teeth came out looking nice and clean with no cavities or rotted teeth. This was a huge relief, we really thought her teeth were bad because of all the vomiting she does and we can never get a toothbrush in her mouth long enough to be effective.
On St. Patricks day Trinity got her new TLSO (brace). It is really uncomfortable for her, but because her scoliosis is getting so bad we have to do something to prolong any surgeries. She has done really well tolerating it.
They have also switched Trinity's formula to EleCare. This is a hypoallergenic medical food to help with the food allergy they think she has to the Pediasure. Unfortunately she will not take this through the bottle orally so without the bottle she really don't get anything orally. This has been really discouraging coming on a year of her having the G-Tube in July, we really thought we would have made some progress by now with her eating, but instead we have gone downhill. This is something we could really use some prayers on!
We had the pleasure of spending last week in Iowa with our family. It was really nice to be with them and nice to have Shannon there with us for the whole week. The weather was pretty good and the girls always love being with their grandparents! Now we are preparing for the baby to arrive in May. Hard to believe it is getting that close!
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