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!

????

I didn't know what to put in the title so I just put ? marks. Well I am sure you already know, but we did come home and are very happy to be here! Trinity has had a pretty good week other then she vomited Wednesday night and Thursday morning. She also had diarrhea this week too, but never ran a fever so I wasn't overly concerned. We kinda don't know what to think at this point, did the shunt revision work?... or did it not? Dr. Haines would like to wait about 3 weeks before we proceed with anything else. At that time they will do a shunt series x-ray and an MRI of the head and spine. Then after we do this we will go from there and see if we need to start looking at her upper and lower GI. I also need to make an eye appointment this week to have her eyes checked. I am going to stop right here and just explode for a minute or maybe an hour!!

When your child goes through 8 surgeries, many days in the hospital, many doctor appointments, many needle pokes, physical therapy twice a week, did I say many doctor appointments, can't eat like a child at her age should, has lost weight and can't gain any back, you start to wonder "WHEN" do things start to look UP for Trinity? It is frustrating!!! I don't complain to much on this blog, but I have discovered that this blog is what helps me get through all of this along with the strength and grace of God! So if you don't want to hear me complain then I suggest you don't read my blog.

I remember the day when Aubree was a baby and would get her vaccine shots. I remember thinking how horrible it was and how I couldn't wait for the day that she didn't have to have those horrible things done every couple months. Now I have a 14 month old, STRONG child that has been poked more then I can count, along with all the other things I listed above. As we left the hospital this week one of the nurses made a comment "hopefully this is your last visit here Trinity" and my reply was "we hope that everytime, but unfortunately we end up here again and again". Trinity cries at the sight of her doctors, it is almost like she knows what is to come and that absolutely breaks my heart. Now I have to have her eyes checked and for most people that seems like a minor task, but to me it seems HUGE. Everytime I take Trinity to get checked by doctors I always walk out with bad news. My daughter will possibly not walk and if she does it will be a long time before she gets the strength to. So for me by taking her to the eye doctor I have a fear that we will add one more disability to the list and she will need glasses to help her see better. "I DON'T WANT TO HEAR THAT!!" But I know I have to take her because the Neurosurgeon says so and her PT says that she needs to be seen also.

Please don't feel sorry for me, but for Trinity. I don't want pity I just want prayer! I am angry, frustrated, and MAD! Why my beautiful daughter? I will tell you what I don't want to hear right now, "Because God has a GREAT plan for her". Why does Trinity have to be used to benefit other people? Put your child in Trinity's shoes for just a minute. Think of all the wonderful things your kids have experienced and got to do. Now imagine how their life would be if your child was Trinity. It sucks and it is hard! I always tell myself that there is someone that has it worse then us, but I still find myself frustrated because I am still living this everyday. Don't get me wrong, I LOVE and TRUST God and his plan for Trinity, but sometimes I just get to a BREAKING point and want to scream! Maybe I should get a punching bag?!?!

Okay enough with this post I am done complaining and whining.

Aubree is finally back home and we are so happy to be together again!! We need to detox her of all the sugar she ate at both grandparent's! Have a great week and I will try to update you all more as we have some appointments this week.

Post Surgery

I don't have much new to report. Trinity's surgery went great. The only not so great part about it is that the shunt was working fine, so it is not the problem. They did replace the valve. They said that the one that she had was an adult size one and so they replaced it with a smaller one. She has a larger incision and they moved it more behind her ear so it won't bother her in the future. She's doing pretty good, but is heavily medicated. They just got done doing a chest x-ray to see if she has fluid in her lungs. She has been getting really raspy in her chest and they are a little concerned because she vomited last night and they are afraid she may have sucked some of it back into her lungs. Hopefully we will know something soon. If that comes back fine then we should get to go home this afternoon. She has been such a trooper like always.

So you are probably asking what the plan is from here? Good question, I talked to one of the residents (because you never talk to the actual doctor around here) he said he was going to talk to Dr. Haines about what should be done next. I am not real sure who's court this is in now, but we will find an answer as to why she has been vomiting. I will say that over the last 4 days she has been doing really good with keeping things down, so maybe the GREAT Physician is already working and we don't need any answers! I will keep you posted with what the plans are.

Sorry we don't have any pictures, but I still don't have a camera and Shannon is hopefully going to bring me one today! Please keep Trinity in your prayers as she recovers and as we find answers for why she is vomiting and losing weight.

Updated:
Trinity will be staying overnight tonight in the hospital. They want to watch her and just make sure that the raspy noise that they are hearing starts to clear up. Her chest x-ray looks good so they are not overly concerned, but want to be safe, rather then sorry!

Surgery on Monday

Hello to all! Well you can tell by the title that I don't have real good news. Trinity will be having a shunt revision done on Monday morning by Dr. Haines.

On Thursday night I was feeding Trinity a bottle and after eating it she sat up to burp and vomited and vomited and VOMITED. It was everywhere including her, me and the chair. Then on Friday morning she ate a bottle again and do I have to say it, yes she vomited AGAIN! :( So I got on the phone with our neurosurgeon's office and they had us come in to do a CAT scan. I really don't know how to explain the rest of this so bare with me it is kinda confusing. The CAT scan really didn't show us anything to be concerned about. Her ventricles look good and there is no fluid around the brain that is of concern, but they are concerned that there could be fluid collecting down by where her opening was and we just can't see it. Dr. Haines feels that it is necessary to go in and revise her shunt. In fact he wants to replace the whole thing with a totally new kind of shunt. So the question is, will this fix the problem of her vomiting? Well we don't really know the answer to that question. We are praying that it does, but for now Dr. Haines wants to start with the shunt and go from there. At this point of all the variables that could be causing Trinity to vomit, this is the most probable. The next area of concern beyond her shunt is her upper and lower GI track. While it doesn't feel good to have to have surgery based on probability, her shunt would be a much easier fix to the problem.

Surgery starts at 9:30 and we have to be there at 7:30 am. We are blessed to have such a great family that will keep Aubree for us. She is going to be staying in Iowa for the week so we don't have to worry about finding a place for her. Please keep Trinity and our family in your prayers on Monday.

Shriners Visit and Easter Weekend

On Friday we had our visit at Shriners where Trinity was seen by the Neurosurgeon and the Urologist. I will start with the good news that we have been able to take Trinity off of the antibiotic that she has been on to prevent urinary tract infections. They did a Urodynamic test on her. Most urodynamic testing focuses on the bladder’s ability to empty steadily and completely. Unfortunately the test was not completely accurate because it is very difficult to keep an infant from moving during the test, but the doctor felt like with this test and the ultrasound they did back in January, that Trinity has no issues right now with urinating and they will retest her in 6 months.

As for the Neurosurgeon, we are still up in the air on what is going on with Trinity. Over the past 2 weeks we have had some issues with Trinity vomiting. It can be everday or everyother. She has been losing weight also of which raises a red flag to the doctors. It could be a number of things going on so they need to talk with Trinity's regular Neurosurgeon (Dr. Haines) and see what he thinks. As of now Trinity has an MRI on the 22nd, but they would like to get it done sooner if at all possible. They also want to do a swallow study to see if it could be reflux, have her eyes checked to see if it could be her eyes, and do an x-ray to check her vocal cords. It could also be the brainstem causing these problems or her shunt. So I really can't tell you a lot other then we are just waiting on the doctors to decide what to do next. I know it is hard to tell from the pictures, but Trinity has lost some weight ever since her last surgery. I can tell when I put her diapers on and when she wears some of her 12mth clothes. Please pray for Trinity and that the doctors would be able to figure out what is going on.


Aubree and Trinity in their Easter dresses!!

We had a "Great" Easter weekend together as a family!! I don't know if you remember but last year we spent it in the hospital and Aubree was in Iowa. It was really nice here this weekend so we got to spend a lot of time outside. We took the girls to the park on Saturday and Trinity got to swing on the swings for the first time (of course we had to hold her), but she smiled the whole time!! We went to church Sunday morning, and never thought I would see the day where I was in a congregation of about 1100 people for just one service. Did I mention there were 7 different services?!? After church we had the pleasure of joining our landlord and his family for lunch. Aubree enjoyed playing with all the kids and I am pretty sure all the kids enjoyed Aubree!!

Hope you all had a blessed Easter weekend!!

"We Appreciate You"

Trinty in her corner chair from Early Childhood

A couple weeks ago I had the pleasure of paying off our last hospital/doctor bill from 2008. As I was writing out the check I thought how this would not have been possible if we didn't have such GREAT people that have supported us financially. I know we say "Thank You" a lot, but we really mean it! We would be burdened with a huge amount of debt if people hadn't stepped up to the plate to help us out. Everyday I am reminded of what wonderful people there are that are praying for and supporting our little girl. Now that Trinity is one I find myself reflecting back to a year ago and thinking of what we were doing on that day, and sometimes I really don't like to think about it. But I am ever so grateful for the wonderful doctors and nurses that took care of our baby and helped her get to where she is today. I miss Dr. Gilmer soooo much, but I know that the move to Minnesota is what was best for our family.

The hospital is not a fun place to spend with your little ones and everyday as I read the blog "My Charming Kids" I think of how crappy it is and emotional when you don't know "why" this is happening to your little angel. Please lift this family up in your prayers and visit there blog when you have time www.mycharmingkids.blogspot.com The mother of Stellan is such a real person in all of her posts. She is not hiding her feelings and I thank her for that, because it makes it easier for us that do to start opening up. When you see her latest post and the video that she made, trust me, you better have some tissues laying close by.

Thanks for checking in on us! As I am writing this we are getting snow, not really what I wanted to see on April 1st.


Trinity and Shaye (or as Aubree says Shaye Bear!)