????

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!)

Physical Therapy

I know it has been a long time since we last updated you. Trinity has been a busy little girl with doing her PT twice a week. She has been such a trooper and doing a great job! They are mostly working on her upper body strength and getting her to build those muscles so she can roll and sit. She tends to cry the whole time (which is an hour), but I am trying really hard to allow her to cry and be strong for the both of us. I never knew it would be so hard to push your child, but it is and I don't think it will ever get any easier. Today they really pushed Trinity and did a number of different things with her. They have a variety of things that help her, like a wedge, corner chair, tube, and some other things that I am struggling to come up with a name for them. Last week I sat her in the corner chair (that has a tray so she can play with toys) and put her next to Aubree while she was playing with her barbies. Aubree put some of her barbies on Trinity's tray and they played together for about an hour. It was the cutest thing and made my day!! I wish I could take pictures for you, but we need to go buy a new camera, so hopefully I will have some pics up for you soon.

Yesterday was also a milestone for Trinity. We bought her a big girl car seat! I know some of you are thinking what is the big deal, but trust me this is a BIG deal. We have been struggling on what we were going to do when Trinity grew out of the infant car seat, but yesterday during our trip to Target I decided to put Trinity in the shopping cart sitting up and then strapping her in. I wish I would have had a video camera with me so you all could have seen the expression on her face. She loved it!! I took a picture with my phone camera and I am trying to figure out how to get it on my computer so when I do I will make sure to post it, but it was the cutest thing! I also found at Target a shopping cart cover so Trinity can sit in that and then there are straps that will go over her shoulders and around her tummy, I haven't tried it yet, but I am praying that it will work. It was a great day for me because it means that Trinity is getting stronger and that we are moving in the right direction (for once). We haven't got to try the car seat yet, but when we make our 4 1/2hr trip back to Iowa tomorrow she will get plenty of time in it. Aubree is really looking forward to it, she thinks that they will be able to play with eachother.

We don't have a lot coming up. Trinity has an appointment at Shriners on April 10th and then an MRI on the 22nd. She will continue her PT twice a week when we get back from Iowa. I ask that you would continue to keep Trinity in your prayers. Everyday is a struggle for her and for us as a family. Your prayers help us be lifted up everyday!

When is Spring?

I ask the question "When is Spring?" because once again Trinity has a really bad cold. It started last week Tuesday and Shannon and I thought that we would let her try to fight it off, but unfortunately it only got worst. On Monday I took her into the Pediatrician to find that she has a slight case of pneumonia. Basically when Trinity gets a cold it is going to be very hard for her to fight it off because she has such a severe case of scoliosis. With scoliosis it is hard for them to get enough air into their lungs to fight off the infections. When they did the x-ray on her lungs they found some spots on them so they are putting her on an antibiotic and we are doing some breathing treatments. So I guess until Trinity gets the scoliosis repaired she will always have a hard time with colds. We are doing some checking to see if Shriners can provide us with a nebulizer otherwise we will probably have to purchase one, since Trinity will always struggle with colds.

I know I haven't updated in a while about Trinity so I am going to backup a couple weeks. Trinity was accepted into the Minnetonka school district for Early Childhood Intervention. They will be doing her PT and OT. The great thing about this is that they come to our house to work with her and they also work with Aubree so she can learn how to interact with Trinity. Today was her first official therapy with OT and it went great. They watched her eat some baby food and a bottle. They also brought what is called a corner chair that has a tray so Trinity can play with toys sitting up and they are at a level that she can reach them. She did a great job in this, especially since she is sick. They were very impressed with how Trinity was doing and they have so many different ideas. It really makes me excited! Hopefully soon we can have her sitting up on her own so she can have some independence! The Physical Therapist comes on Thursday morning and that will be our first time meeting him. It is so nice to know that there are programs out there to help kids with special needs so they can do the things that other kids can. It helps reduce the stress on the parents.

Trinity also had her one year checkup a couple of weeks ago and they had some concerns. She lost some weight after the last surgery and has not been gaining any back. They are going to recheck her in a couple weeks and if she don't gain any then they are going to do a swallow study to see if she has any reflux problems. This cold is not helping any because Trinity is not that interested in eating, but hopefully she will start feeling better and start eating more.

If you think of Trinity please pray that she would start feeling better and that her lungs would clear up. Even though she feels crummy she still has such a big smile on her face!