On Thursday Trinity had an appointment with her urologist. This was actually the first time that we had met him. Trinity had a urodynamic test done in December before her untethering surgery and that came back good, so they didn't want to see Trinity for another 6 months.
Dr. Vandersteen, urologist, is a partner with the other urologist that we have seen before at Shriners so it was nice that we didn't have to explain Trinity's situation all over again. He explained that there are a few different types of bladders and Trinity has one that has weak muscles on the outside causing her urine to constantly leak out and not strong enough to hold in her urine. This is not a problem at this time in her life, but when Trinity starts to get older and asks to get out of diapers he recommended at that time that we think about doing a surgery to tighten the muscle on the outside so the urine can not get out and she would have to learn to cath herself. This is defiantly something that we don't have to think about right now, but down the road. We are just happy that at this time she has only had one bladder infection in 2 years.
As for her bowel we are still trying to figure that out. Trinity has issues with constipation and we can not get it under control. We are using Miralax and suppositories and they both are not helping. The Miralax is not near effective because we put it into her bottle of Pediasure and since she don't eat a whole bottle at once she is not getting the full effect of the medicine. They want us to discuss the constipation with the GI doctor next month. An option that we have is to do a surgery that would help flush the bowel on a daily basis, but we want to try to figure this out without surgery if possible.
It was very enjoyable to have a doctor that don't want to play God with our daughter and knows who God is! He made the statement that after I asked the question, "What are the chances that Trinity would learn to urinate on her own when she is older and she won't need diapers or the surgery?" his response to me was that a miracle can happen, but God performs those! That statement is huge to us as so many doctors want to act like they can fix our daughter and perform miracles and really they can't perform the miracle, that is up to God!
We are really enjoying this nice weather and today we got to have a picnic at the park and the girls love playing at the park! Trinity loves being outside and it brings so much joy to our lives to watch her enjoy herself as she plays with Aubree and other kids around her. Really good Extreme Home Makeover tonight on TV that had a 6 year old boy with spina bifida. Hope you got a chance to watch it, the mom made the statement how much joy he brings to them and those around him, Shannon and I have the same feelings with Trinity.
Sunday, May 16, 2010
Wednesday, May 12, 2010
Too Busy?!?!
Over lunch yesterday with Shannon I had stated that I hadn't posted anything since March, his response was, we probably won't have anybody that reads the blog anymore, but even if there is just one of you that reads this that is okay with me!
Trinity has been a busy little girl and without boring you too much I will try to keep this post as short as I can.
Neurosurgeon:
Things look really good for right now for Trinity. She has no issues that need to be taken care of with the Neurosurgeon. He does want her to see a sleep doctor and hopefully we can get some help with her sleeping, since she wakes up 2-3 times a night! With Chiari they have sleep apnea and Dr. Partington feels that is why she is struggling sleeping. Other then that he feels like she can go 8 months without seeing him, which is HUGE!
Orthopedic Surgeon:
Since the last post Trinity now wears a TLSO (abdomen brace) and AFO (ankle & foot braces). She has some nice new sneakers and loves it when people ask her about her new shoes! So far we are doing really good with the braces. She wears the AFO's most of the day and the TLSO about 6-8hrs. They would like her to get more time in the TLSO, but we are working on that with her vomiting. They have done another x-ray with her in the brace and they didn't see a huge improvement, but they are hoping the more time she spends in it the better the improvement. They would like to try to get her to continue to grow before thinking about surgery. She is still at a 67degree curve and they don't want it to get any worse. So we are crossing our fingers and praying that we can get through a couple more years. We will see the surgeon in August and at that time they will recheck her curve and see where she is at.
Feeding Clinic:
We have finally got into the feeding clinic and things are starting to move in the right direction. Yesterday Trinity had an Upper GI and Swallow Study done. The GI showed that she has some reflux and the swallow study looked really good. We don't know a whole lot until we see the GI doctor in June. They would like us to consider a G-Tube that would be placed into her stomach. This way we could control her eating and know how much she is getting. This is something Shannon and I are considering, but it really is up to the GI doctor and what she feels Trinity needs. She starts some speech and occupational therapy in a couple weeks through Gillette and that could consist of 1-2 visits there a week. This is going to be very time consuming with her other therapy that she gets through the school, but she needs to learn how to eat. It is kinda weird her mom is trying to get thin and she is trying to gain some weight, too bad I can't just give her my weight, now that would be nice!
They also talked about her teeth and the fact that they are turning brown. This is because of the Pediasure and the amounts of sugar that is in it. So we are working with her on brushing her teeth, this is not going real well since she gags when things are in her mouth, so please pray that they gagging would stop and we can make some progress on the teeth brushing. They feel really good about her size and although she is below what other kids her age are at shes at a good weight for her height.
Wheelchair and Stander:
The school is looking into some wheelchairs for Trinity. It will probably not be until August or September when she officially gets one. There is alot of trying and making sure that we find the right one to fit her needs and body type.
She is officially using a stander! This was a big step for her and she has worked her way up to an hour at a time. She can be in it 2-3 times a day. She really enjoys it and she has grown a 1/2 inch since using it!
Things have really been going pretty good with Trintiy. She loves being outside and playing with her sister and the neighbor girls! We are trying to find a tryke for her that she can use her hands, but the price of them are so high. We are hoping the school can get one or we have been looking on Craigslist and Ebay. Daddy got her a helmet last night, so she just needs some wheels!
We are reminded everyday how truly blessed we are! Shannon and I have a great marriage with two beautiful daughters that God has entrusted us with. We are learning to focus more on the beauty and joy of life instead of all the negatives! I received a very special gift on Mother's Day from someone that probably don't realize the gift she gave me. She shared with me that she prays for Trinity everyday and that she recently had a dream with Trinity and Jesus in it. She told me that Jesus is going to do great things with Trinity and she wants to be there to watch. What a great gift! It brought me to tears and gave me so much hope in knowing that God has big plans for our little girl and despite the trials that she faces there is JOY in all of this! Thank you sooo much Cathy Lund, for sharing that with me, it means the world to Shannon and me!
I promise I am going to start updating more and I am going to take some time and put some recent photos of Trinity on her soon!
Trinity has been a busy little girl and without boring you too much I will try to keep this post as short as I can.
Neurosurgeon:
Things look really good for right now for Trinity. She has no issues that need to be taken care of with the Neurosurgeon. He does want her to see a sleep doctor and hopefully we can get some help with her sleeping, since she wakes up 2-3 times a night! With Chiari they have sleep apnea and Dr. Partington feels that is why she is struggling sleeping. Other then that he feels like she can go 8 months without seeing him, which is HUGE!
Orthopedic Surgeon:
Since the last post Trinity now wears a TLSO (abdomen brace) and AFO (ankle & foot braces). She has some nice new sneakers and loves it when people ask her about her new shoes! So far we are doing really good with the braces. She wears the AFO's most of the day and the TLSO about 6-8hrs. They would like her to get more time in the TLSO, but we are working on that with her vomiting. They have done another x-ray with her in the brace and they didn't see a huge improvement, but they are hoping the more time she spends in it the better the improvement. They would like to try to get her to continue to grow before thinking about surgery. She is still at a 67degree curve and they don't want it to get any worse. So we are crossing our fingers and praying that we can get through a couple more years. We will see the surgeon in August and at that time they will recheck her curve and see where she is at.
Feeding Clinic:
We have finally got into the feeding clinic and things are starting to move in the right direction. Yesterday Trinity had an Upper GI and Swallow Study done. The GI showed that she has some reflux and the swallow study looked really good. We don't know a whole lot until we see the GI doctor in June. They would like us to consider a G-Tube that would be placed into her stomach. This way we could control her eating and know how much she is getting. This is something Shannon and I are considering, but it really is up to the GI doctor and what she feels Trinity needs. She starts some speech and occupational therapy in a couple weeks through Gillette and that could consist of 1-2 visits there a week. This is going to be very time consuming with her other therapy that she gets through the school, but she needs to learn how to eat. It is kinda weird her mom is trying to get thin and she is trying to gain some weight, too bad I can't just give her my weight, now that would be nice!
They also talked about her teeth and the fact that they are turning brown. This is because of the Pediasure and the amounts of sugar that is in it. So we are working with her on brushing her teeth, this is not going real well since she gags when things are in her mouth, so please pray that they gagging would stop and we can make some progress on the teeth brushing. They feel really good about her size and although she is below what other kids her age are at shes at a good weight for her height.
Wheelchair and Stander:
The school is looking into some wheelchairs for Trinity. It will probably not be until August or September when she officially gets one. There is alot of trying and making sure that we find the right one to fit her needs and body type.
She is officially using a stander! This was a big step for her and she has worked her way up to an hour at a time. She can be in it 2-3 times a day. She really enjoys it and she has grown a 1/2 inch since using it!
Things have really been going pretty good with Trintiy. She loves being outside and playing with her sister and the neighbor girls! We are trying to find a tryke for her that she can use her hands, but the price of them are so high. We are hoping the school can get one or we have been looking on Craigslist and Ebay. Daddy got her a helmet last night, so she just needs some wheels!
We are reminded everyday how truly blessed we are! Shannon and I have a great marriage with two beautiful daughters that God has entrusted us with. We are learning to focus more on the beauty and joy of life instead of all the negatives! I received a very special gift on Mother's Day from someone that probably don't realize the gift she gave me. She shared with me that she prays for Trinity everyday and that she recently had a dream with Trinity and Jesus in it. She told me that Jesus is going to do great things with Trinity and she wants to be there to watch. What a great gift! It brought me to tears and gave me so much hope in knowing that God has big plans for our little girl and despite the trials that she faces there is JOY in all of this! Thank you sooo much Cathy Lund, for sharing that with me, it means the world to Shannon and me!
I promise I am going to start updating more and I am going to take some time and put some recent photos of Trinity on her soon!
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