Surgery?

We are having a great summer so far! We made our first trip to the beach a few weeks ago and the kids had a lot of fun! Trinity did great in the water and had so much fun army crawling on the beach. School will be here before we know it. I can't believe I will have a kindergartner and a preschooler! I am having a hard time with it. :(
A few weeks ago we were in Iowa and had an appointment with an orthopedic surgeon at the University of Iowa, Dr. Weinstein. We didn't learn anything knew regarding Trinity's scoliosis. He feels that there is no doubt that she needs the surgery and that it needs to be done soon. He said that he feels that we are in good care here and that there should be no reason a surgeon up here couldn't do the surgery. He don't feel it is necessary to do the surgery in Iowa, especially with all the follow up care that she will need and the risks is infection and her body rejecting the rods. He agrees that the brace is doing no good, but that she would definitely need to wear it for about 2 months after surgery to keep her back straight.
We are still really struggling with this surgery and the surgeons. We want the best for Trinity and making these decisions can be so hard on the both of us. The biggest hangup is Trinity's size and her age. This is not a common surgery for her age and her size. She don't have much fat on her body.
As for now surgery is scheduled for September 29th. The surgery can take anywhere between 5-6 hours, but if they have to go through the abdomen and the back it could take 9-10 hours. I don't even like to think about it. I have given this to the Lord and we are trusting in Him to guide and direct our decisions.
On Thursday we see her Urologist. This will be an interesting visit considering that Trinity has had numerous UTI's in the last 2 months. Hopefully they won't want to do anything sugically soon, but surgery has been brought up before.

Busy House!!

Wow! It has been a long time since our last post. I guess that means we are really busy with our new addition to the family. We were blessed on May 17th with our baby boy, Trew Duane Arthur. He weighed 7lbs 14oz and 19inches long. He's such a good baby and has been a huge blessing to our family! Most think that he looks like his dad, but I am hoping that might change so I could get one child that looks like me!! (not looking real promising) Trinity and Aubree love him so much and are big helpers! Trinity likes to steal his pacifier from him, but we are working on that :) Aubree is a little momma to all her siblings and this helps mom out a lot. We are very blessed to have such a wonderful family!!!

Last Monday we had an appointment with Trinity's Orthopedic Surgeons. Not great news unfortunately :( To better explain our appointment I am going to type right from the dictation of Dr. Walker.
"On examination today, Trinity was examined by Dr. Koop and myself. Inspection of her back reveals once again that she has a large left thoracolumbar prominence. She has a deep right waist crease. With traction under axilla and pressure over the lumbar spine, there is moderate flexibility and the curve can be improved. Examination of her hips reveals that she does have a mild hip flexion contracture of approximately 5 degrees on the right and 5 to 10 degrees on the left.
Her previous x-rays were reviewed including her sitting AP and lateral x-rays out of her braces on April 21, 2011, as well as the traction film. Out of the brace, her curve measures close to 85 degrees from approximately T8 to L4. Her traction film shows this improved to approximately 60 degrees.
At this time, it would be reasonable to proceed with surgery since bracing is no longer effective. If the curve is not addressed, it would likely get progressively worse and eventually lead to greater problems with regard to sitting, skin issues, and potential other longer-term issues, such as pulmonary or cardiac problems. In light of her young age and size, some form of surgery to preserve growth would be preferred. There would be options of possible single or dual growing rods versus VEPTR therapy. In specion of her skin and soft tissues show that she does not have a great deal of soft tissue coverage. Dr. Koop and I agree that some form of a "growing rod" type system would be our preferred choice. However, both types of implants have issues or concerns. First of all, there would be a potential risk such as infection, rod breakage, or loss of fixation to the spine either proximally or distally at the upper or lower parts of the spine. In addition, we would have the initial surgery and most likely be able to put in a single growing rod. This may mean that she would need to have continued use of a brace. Eventually, she would potentially have a second growing rod placed if she had adequate soft tissue coverage and size. Furthermore, the goal would be to preserve her growth. She would need to have a subsequent scheduled lengthening every six months to lengthen the implants. However, if an unscheduled problem or complication arose, such as infection, loss of fixation, or a broken implant, then she might need to have an unscheduled or unplanned procedure. Ideally, we would try to preserve her growth for at least the next three to five years. If we can preserve growth until she is age 8 or older, then she would potentially require a definitive fusion of her spine at that time. If we encountered overwhelming complications, then we many need to abandon the implants and remove them."
So there it is the plan going forward for Trinity. However, I will be back this month while Shannon is in Alaska and have scheduled an appointment with a doctor in Iowa City. We feel like something this complicated needs to have a second opinion. If anything to give us peace of mind. The surgery is scheduled for September 29th. We wanted to get it on the books since both surgeons have conflicting schedules.
This is a huge decision for our family. We would greatly appreciate your prayers as we get the second opinion, but also pray for the doctors and that they would have confidence in this surgery and that God would guide them moving forward.

Growing Rods vs. VEPTR

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!

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!

Happy "3rd" Birthday Trinity!!

Wow, has it really been three years since God blessed us with the most amazing miracle? We have thought back a lot lately to what all has happened in the last three years with Trinity and it feels like a roller coaster ride! We are so blessed to have such an amazing little girl that through everything she has encountered shows so much strength and determination. We are so lucky that God chose us to be her parents!
Thanks for all the prayers through the last three years. Although things continue to go on in Trinity's life and prayers are still very needed, we feel very blessed to have our family and friends always supporting us in prayer!

Crazy Busy!!

It seems like 2011 has already been crazy busy for us! Trinity has had a few appointments lately. She had a Urology appointment last week that showed some spots on her bladder. They went ahead and started treating her for a UTI, which was confirmed on Monday that she had. On Wednesday she had a Brohnoscopy, Cystoscopy, and a Endoscopy. We are waiting for some biopsies to get back on the Edoscopy and the Brohnoscopy, hopefully we will know something on Tuesday or Wednesday. It did show that her esophagus is very irritated and that could be a cause of a number of things. They promised us that we would not walk away from this without some answers, so I hope that is the truth! The Cystoscopy showed that Trinity's bladder and her sphincter are working against eachother and making it so she don't empty all the way. They would like us to start doing catheters 4x's a day. This was a big disappointment, just because we have always looked at this as being the one thing that was going good for Trinity, but I guess it was bound to happen. They are also going to work on some different ways we can get Trinity to get oxygen at night, since we still have not had any success of her wearing the mask. They want to start machine at night also to see how low her oxygen is going, especially when she is sick with a cold. We are really blessed so far this winter that Trinity has only been sick twice, which is a huge improvement from last year, so we really feel like what we are doing is working for her.

On Thursday we had an appointment with the Dentist at Gillette. Trinity freaked out and cried the whole time, but the little time that he did get in her mouth he didn't see any cavities or rotting teeth, which is great news! In June they are going to put her under and go in and do x-rays, scrape off the decay, and clean her teeth. He said that the brown spots on her teeth will come back because of her diet and vomiting, but they will try and clean them at least once a year. Her mouth is also overcrowded which is pretty common with Spina Bifida kids, so down the road she will have to have some teeth pulled to make some room in her mouth.

I have been feeling pretty good and we have been busy trying to decide on some names and what we are going to do with our room situation. Aubree thinks she is a big girl now and can go downstairs, mom is the one that struggles with it! Aubree has been doing really good in school and Trinity is really excited to start school in the fall.

It is nice to see the sunshine today and finally be up in the 30's. I can handle the snow, but this below 0 temps is getting really old!

We hope everyone has a great Valentine's Day!!!

It's A Boy!!

On Monday we had our 20 week ultrasound. Because of Trinity's condition we had to have a level 2 ultrasound so they could make sure everything was good with this baby. I will admit it was a little nerve racking going in and waiting to hear good or bad news. The great thing is that the baby looks great and they don't see any signs that there are any problems. It is so amazing the things they can see on those ultrasounds, but I am so thankful for them! We also found out some exciting news, we are having a BOY!!! The girls are really excited and daddy is pretty excited too! My due date is still May 28th, but I will be having a c-section so he will probably come a little sooner then that. It was very refreshing to walk out of the clinic and feel relief for a healthy baby!

Trinity has also had a lot going on. She got her wheelchair and it is going very well for her. They have a few adjustments to make to it and we have to get a tray made, but other then that she's very happy with it!

On Dec. 23rd we seen a Pulmanologist @ Gillette. This was a great appointment and we felt like we are going to start getting some answers. The doctor spent over an hour with Trinity and discussed a lot of what happens on a daily basis for Trinity. He put her on Pulmicort twice a day through her nebulizer and also ordered a breathing machine for her that she is to do at naptime and bedtime. Unfortunately we have yet to get her to wear it, but everything is a work in progress. This should help with her sleep apnea and help open her lungs up and get some fresh air, in hopes it would decrease her pneumonia's. We are waiting to hear back from the hospital to get her in for a a couple night stay to do some testing on her stomach and lungs. With this stay they may look at doing a G-J tube. This would change her tube from going to her stomach and then to her small intestine and instead her tube would go straight to her intestine. This should help with some of the issues Trinity is having with vomiting. Shannon and I are a little leery of this because of how active Trinity is (in her chair, army crawling on the floor, etc...) and she would have to be hooked up to her feedings more throughout the day instead of just getting her overnight feeds. But whatever is the best for Trinity we want for her. I pray for the day that she can eat regular food and enjoy the tastes of things.

We enjoyed two weeks in Iowa with our families, but are glad to be home and get back into our daily routines. Trinity has her evaluation through the school on Tuesday and we will discuss what we will do for school come fall. She has made so much progress on her speech, but unless you spend a lot of time with her it can be difficult to understand. We are looking at an Ipad for her with a speech program, but we want to make sure it is the best thing for her first and that it will meet her needs to communicate with others.