Saturday, June 20, 2009
Trinity is doing pretty good. She had an MRI on Wednesday to look at her Chiari and Shunt. Everything looks pretty good. She has a lot of scar tissue, but there is really nothing they can do about that. We also had to discuss the problem with getting an IV started in Trinity. Everytime she has to have an IV they have a terrible time getting one in and for the MRI she had to be sedated so they had to do an IV, well after the 4th poke and getting the manager to do it they finally got it. I discussed this problem with some of the nurses and the anesthesiologist and they wanted me to discuss this with the Neurosurgeon and talk about some options. There really are only two other options and the one will not work for Trinity because of her low muscle use in her rectum, so the other option is a port. Dr. Haines said that it will probably be an option if she has to have another surgery. So we are praying that things will change for Trinity and they won't have such a difficult time, but they told us that the older she gets the harder it will probably be. Her shunt is working like it should, and I love the new valve, because it is so much easier for them to reprogram after an MRI.
We are going to make contact with her pediatrician this week and get a swallow study done soon. Trinity is still not gaining weight and Dr. Haines even mentioned this at her last appointment. We also have a call into the Orthopedic Surgeon because of her brace. Trinity is suppose to be wearing it at all times except when she eats and sleeps, well for those of you that know Trinity she sleeps at least 4hrs during they day and about 13hrs at night, so that leaves her about 7 hrs, but because she can't wear it while she eats that takes away another 3hrs because we have to give her time to get the food digested and settled into her stomach. Well when you really add it up she is only getting at the most 4hrs in the brace, if that. We have also been having issues with her vomiting while having it on. So we are trying to figure out something that will work for Trintiy. It has been a week now without wearing it and that makes Shannon and I nervous, the last thing we want is for Trinity to have surgery earlier then we wanted to help correct the scoliosis. Hopefully they will get something figured out soon so we can get her back into it.
She hasn't had much PT lately because of the summer hours, but I try to fit them in a couple times a week and any activity for Trinity is PT.
The girls and I get to head back to Iowa on Monday and are really looking forward to spending a week with some family and friends. Shannon will be coming on Friday and then riding in the Poker Run for Stella Turnbull. If you remember last year Co-Line had a Poker Run for Trinity and this year it is for our "great" friends daughter Stella. All the proceeds will go to help her get wheelchair/van. If you live in the Lynnville area or surrounding communities please come join in raising money for such a special little girl! Here is her website with all the details http://www.caringbridge.org/visit/stellaturnbullturnbull
Have a great weekend!
Saturday, June 6, 2009
Last week we made an unexpected ER visit with Trinity. She had a really nasty cough for over a week and I took her to the doctor to find that she had viral pneumonia, they wanted her to go on to the ER to make sure that a good x-ray was done and to look her over really good. They did determine that it was viral pneumonia and they sent us home with a nebulizer to give her treatments every 4hrs. In the last 2 days she has finally been getting over her cold and starting to act more like Trinity. Now Aubree is sick, I swear we don't get many breaks around here!
It has been a good week for Trinity. We had PT on Thursday and she did great!! We sat her in a sitting position and while leaning on her right arm she sat all by herself for 1 minute and 15 seconds, this is a record!! She also layed on her belly and pushed herself up on her arms with no help from anyone. This made my day and pretty much my week. The physical therapist was very impressed with how well she did, especially after having pneumonia. She's getting such a personality and it is so much fun to watch. A big hurdle we are trying to get over is the eating problem. She still can't eat any table foods without vomiting, so I am waiting to hear back from Shriners to see if they will do the swallow study or if our pediatrician should order it. We need to get something figured out so the girl can start eating some fun foods and gain some weight! I looked at Aubree's medical records from when she was born and I compared them with Trinity's I got quite a laugh out of it. When Aubree was 15 months old (like Trinity is now) she weighed 28lbs, Trinity only weighs 17lbs, how funny is that! So you can see now why Trinity can not fit into most of Aubree's clothes that she wore when she was 15mths old! I love it though, Aubree and Trinity are so different in so many ways and I love that God chose Shannon and I to be there earthly parents. They both bring so much joy to our lives!
We are having a rainy day here, but it is desperately needed. I have a great neighbor that I and the girls have grown to love! They have 3 girls all under the age of 4 and Aubree loves playing with them. We are going to take them to a indoor playground and let them get rid of some energy today. :-)
Hope you all have a fantastic week!