Shriners & Swallow Study

On Friday Trinity had an appointment at Shriners in the morning. We were scheduled to have an x-ray and then she was going to be seen by the Orthopedic Surgeon and the Neurologist, things kinda changed after the O.S. seen her x-ray. If you remember back to April Trinity's x-ray showed that her scoliosis had gone from a 38 degree curve to a 45 degree curve. Well this visit it has gone to a 50 degree curve. For a child that is 17 months old this is not a good thing to see, especially since her curve has gotten 12 degrees worse since January. We tried the TLSO, but because of her vomiting she don't get to wear it very often. So the O.S. called the Chief of Staff @ Shriners which is also the Spine Dr. He took a look at Trinity's x-rays and evaluated her. He told me that if I had called him over the phone and told him that Trinity had a 50 degree curve, he said he would have told me it is time for growing rods. But because he now knows Trinity's situation they are looking at MRI's that she has had done to see what her spine looks like and to see if she has a severe tethered spine (where the spine connects to the skin). This could cause her scoliosis to get worse in such a short time. If there is a severe tethered spine then they will have to go in and separate the skin from the spine. After that is done we need to get her vomiting under control and get her brace back on her, but inevitably Trinity will have growing rods and a lot sooner then later. This was very difficult news for us. A growing rod has to be adjusted twice a year and they have them until they are through their growing years. After that they go in and try to straighten the spine. This is overwhelming for all of us. We have a lot of decisions to make and need to start thinking of Trinity's care and the doctors that she sees. I got to meet another Neurosurgeon @ Shriners that I felt very comfortable with and he is located at Gillette Hospital. We pretty much found out that we are at the wrong hospital (U of M, Fairview) and need to be thinking about switching to Gillette. Not because the U of M is bad, but Gillette specializes in Spina Bifida, so they deal with Trinity's situation on a daily basis. Many doctors came in and seen Trinity trying to figure out what is going on, but we are kinda at a stand still until they see and discuss the MRI with Dr. Haines. The PT/OT got to see her in her new wheels and they were very impressed with that. We discussed a wheelchair, but it is something that they want to wait on until she is 2 1/2 or 3. Shannon and I were trying to push it since we have already met our out of pocket for the year, but according to Shriners if our insurance don't pay for all of it or none at all the Women's Auxiliary club will (why we do that can tabs!). This was great news!

In the afternoon she had her swallow study done at the U of M. They have her drink some chalky stuff and watch her swallow it through an x-ray (very neat to watch this). They also fed her some stuff that was somewhat thick and see how she swallowed that. She did a great job and they don't feel like she has any difficulty swallowing. She has an immature mouth for her age (about a 6 month old) so we need to work on this and train her mouth with different foods. So we are still not sure why she is vomiting, but we are going to make an appointment with a GI doctor at the U of M. We will let you know when we have that appointment and how it goes.

I know this is a long post and I hope you understand it too. There is so much to tell you about Friday, but I honestly have such a hard time typing all of it. Friday was a very long and emotional day for all of us. I am constantly trying to figure out the "Why's" and I never get any answers. The doctor told me that things are going to get better for Trinity, sometimes it just takes awhile to get through all the road blocks. I appreciate his confidence, but it still don't help the emotions I feel for our little girl and all the things that she has had to go through lately and the things she will face in the future. We need prayer and lots of it. We have a lot of decisions to make and we don't want our emotions to get in the way of making the right ones. We only want what is best for our little girl.

Trinity's Caster Cart

Trinity wheeling herself around on the caster cart

Trinity is all smiles when she gets to have the freedom to go where she wants and get the things she wants!

This is the first day in the caster cart!

Last week Trinity was introduced to her Caster Cart. Trinity's therapist really didn't expect much out of Trinity when he put her in it, but within minutes she started pushing the wheels and moving herself around. The caster cart is used to teach children how to use wheelchairs. I have not seen her this happy in a long time. She smiles when she moves and she is moving to get things that she wants. It is such an awesome thing to watch. It is like watching a child take their first steps! It was a bittersweet moment for Shannon and I, it makes you sob when you see her do it. I can't wait for the things to come for Trinity and the freedom that she is going to feel.

On Friday Trinity has a visit at Shriners. She will see the Orthopedic Surgeon and they are going to do some x-rays to look at how her scoliosis is doing. We head to the UofM in the afternoon for her swallow study. Please pray for Trinity and the doctors so we can figure out what is going on and get her to start gaining some weight.

No Title :(

Sorry, I get sick of trying to come up with a title so I decided to name this one "No Title", seems appropriate.

There really is not a lot to report. We are still having a lot of issues with Trinity vomiting. Last week on Tuesday, Trinity and I spent the afternoon in the ER. Trinity was having some vomiting and was very lethargic. They did a CAT scan, blood work, and a urine sample. Everything came back good and she did not show any signs of a UTI. Her shunt also looked good, so we left there with still no answers as to why she continues to vomit. This week we finally got the Pediatrician to get a swallow study scheduled with the UofM. Unfortunately they can not get her in until the 24th. To Shannon and I this is a long time to wait, considering the amount that Trinity vomits in a weeks time. It breaks our hearts to have to watch her go through this and not be able to do a thing for her. We feel so helpless and wish we had answers. But she is such a trooper and always has a smile at the end of it all!

On the 24th Trinity will also be seen at Shriners and they will look at her Scoliosis again with an x-ray. Trinity has not been able to wear her TLSO for almost a month now. This has been frustrating, but the right thing to do since it does not help with the vomiting and only makes it worse for her. So hopefully on the 24th we will get some answers and hopefully her Scoliosis has not gotten any worse.

Trinity really enjoys being outside with her big sister! As long as the temperature is not to hot and there is somewhat of a breeze. She's doing amazing in physical therapy and is trying so hard during her sessions even though you can tell she don't want to do it. With the support of her arms Trinity is sitting on her own for almost 2-3 minutes. This is progress!

I am sorry for the delays in posting sometimes, but things are getting busier for us the older Trinity gets. I would like to try to update you at least every week, but sometimes that is not possible. Please know that we still appreciate your prayers as Trinity continues to grow and prayers that we would find out the cause for her vomiting.

We hope you all have a fantastic weekend!

MRI

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!

Pneumonia and PT

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!

Many New Updates!!

I want to apologize for not updating about 2 weeks ago, but it seems like things have been busy here and the blog seems to take last place.

Trinity is doing really good. She got her brace 2 weeks ago at Shriners and she has been doing pretty good with it. She definitely has her times when she gets upset and irritated with it, but we have been trying to give her breaks throughout the day so she don't end up hating it. She has to wear it on the outside of her clothes or we have to put a onezie on under it, to make sure to protect her skin. Before the TLSO Trinity got hot real easy and now with this it is about 10 times worse. But we will figure something out for the summer to help keep her cool.

She has also been seen by the eye doctor recently. Trinity had many different tests done to her eyes and they basically came up with that she has issues with being cross eyed. This is probably due to the pressure that was put on her brain causing the muscles of the eyes to have pressure put on them. So for the next 4 months we are going to do eye patches everyday, for 2 hours, alternating eyes. She really don't seem to mind this and we usually do it during her most awake times. She will be seen again in September where they will decide on whether or not to correct the crossing by going in and straightening out the muscles of the eye. She don't show a need for glasses right now, but that is something will check on after the crossing has been fixed. We really have to focus on the eye problem, because when kids are cross eyed they will begin to choose one eye over the other, and then stop using that eye at all, which can make the eye go blind. So we really don't want that.

We were suppose to have an MRI done yesterday, but because Trinity has a really bad cold they felt it would be too risky to put her under for that long, so we had to reschedule. I was really looking forward to this MRI so we could see how the brainstem was looking and to look at the spinal cord and see if there was any tethering. But I guess we will have to wait until the 17th.

We really enjoyed our month of May. We got to go back to Iowa for Mother's Day and some graduation parties. This last week Shannon took the girls back to Iowa for a little vacation and I went to Laguna Beach, California with two of my girlfriends, Amanda and Caprice. We had a great time and it was so relaxing!!

There are many prayers needed all around. At night Shannon and I pray with the girls and it seems like we are always adding someone new to our prayer list. Please add the following people to your prayers: LeAnn Hasley, Arvin DeCook, Mike Lind, Trinity (her nasty cold), all the kids that are sick with an illness inside the hospitals, and my friend Amanda's sister-in-law Heather. I am sure there are more, so if you need prayer or no of someone that does, please comment on this post I will be sure to add them. That is what I love about this blog, everytime I put a need on here I know someone is going to help in praying for it! Thanks to all of you that take them time to pray for those in need.

Have a great week and I promise I will start updating more!!
**I will also be posting some new pics of Trinity real soon!!

Scoliosis & TLSO

Last Tuesday we went to Shriners to have Trinity seen by the Orthopedic Surgeon. Before he seen her he had an x-ray taken to look at Trinity's hips and her scoliosis. He found that her scoliosis had gone from a 38 degree curvature to 46 degrees. With that being said he felt that it was necessary to put Trinity in a TLSO (abdominal brace) to prevent the curvature from getting any worse. She will wear the brace everyday except when she eats and sleeps. The brace will have to be worn until she is old enough to do surgery and put rods in to help straighten out the curvature. The surgery would probably be done sometime in her early teens, unless the curvature gets worse and then they would look at doing something else which would involve a surgery every 6 months. So we are hoping that this works and keeps it from getting any worse. She will get her brace next Wednesday at Shriners. I took some pictures of them forming her for the brace. I will try to put them on later this week or next week when I post some with her new brace.

This will be a hard transition for Trinity and the family. I look at what all she has gone through so far and I know that this will probably be minor in HER eyes! I am so grateful that the brace will be of no cost to us because we are having it done at Shriners. It takes such a burden off of our shoulders when we know that we don't have to worry about the expense of the brace, especially since she will need one everytime she grows out of the old one.

Trinity's PT also brought over a new high chair that will work with her chair from Shriners. This way she can sit at the table with us while we eat and she can play at the table. She really enjoys this!

PRAISE: Trinity has not vomited in over a week!!! We are praying that the problem has been fixed or maybe God (the GREAT physician) performed a miracle!