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.

Changes @ the Arthur Household

Wow has it been a long time since the last post. We have had a lot of changes here and not just for Trinity. Unfortunately as I write this we are getting over a foot of snow, blah, and blizzard like conditions. Not really what I wanted to do on my Saturday, but I guess since we are stuck inside I should take the time to update all of you.

We got some unexpected news about 2 1/2 months ago and have needed some time to adjust to the news and what it means for our family. Aubree and Trinity will have a new sister/brother in May! We thought we were done having kids, but God decided differently. It has been a hard thing to adjust to, but the girls are really excited and I am finally starting to feel better. We have already had one ultrasound and they felt everything was looking good so far. We should have another one in a few weeks and hopefully find out what we will be having.

Trinity has had some exiting things and some not so exciting things happen lately. On Friday she got her new wheelchair that she can officially call her own! This is very exciting for her and gives her so much mobility. It really makes her look like a big girl. Another good note is that a few weeks ago she had her eye appointment and her eyes look great! They said she has 20/60 vision, which is great and her alignment is looking really good. The only issue that she has is her scanning, but that is because of her Chiari and just something we have to work with her on.

We took her to Gillette to see a Pediatric Specialist in hopes to get some answers for her eating, how her g-tube site looks, and with the winter months coming we worry about pneumonia's. She seen Dr. Faville, which was one of the doctors she seen when she had her g-tube placed. He took some time with Trinity and I as we talked through a number of things. He also tried burning some of the granulation tissue that has formed around the outside of her g-tube site. This will be something we will have to do at home about once a week in hopes that it will get rid of it and the green mucus that is also forming. They are going to schedule a visit to see a pulmanologist to discuss her lungs and talk about some preventative things that we can do for Trinity this winter. They would like to do a PH-Probe and also fill her stomach up with milk and a dye in hopes that when she vomits they will track where it is going and if it is traveling into her lungs. We were hoping to get this done sooner then later, but we are having a hard time getting in. We also won't be able to see the dentist at Gillette until February, which is a lot longer then I wanted to wait, but I guess you just get what you can get and hope there will be some cancellations.

Overall Trinity is doing really well. She is having her regular therapy sessions for speech, physical, and occupational, three times a week. We are talking about starting preschool next fall, but the mama is having a hard time thinking of that! We are ready for Christmas here and excited to go back to Iowa to see everyone!
We hope you all have a Very Merry Christmas and a Happy New Year!!!
Love, The Arthur's

Changes in the Arthur Household!

Trinity is not feeling very well these past few days. Yesterday we had to take her in because she was running a fever of 104 and was shaking. I was so worried that it was her shunt, but I guess Tonsillitis is better then a shunt malfunction. They put her on some medicine and hopefully it will be gone and she can be her happy self again. She also has some spots on her that look like spider bites, but the doctor thinks that it is boils or staff?? I need to do some research on this, but they were concerned because it can be harmful to her with her shunt, so we are doing a cream twice an day and hoping that it goes away soon.

Shannon and I could use some prayers as we have some decisions to make for Trinity and her sleep apnea. We took her to an ENT doctor in hopes that it would just be her adenoids and we could get them removed and that would help, but unfortunately her adenoids are not the BIG problem. They would like to go ahead and remove them and her tonsils and see if it helps, but there are some risks. Because Trinity vomits so much it could cause her to bleed more then usual and cause a problem for healing. Her sleep apnea is pretty severe and they would like to get something figured out to help her breath better when sleeping and to also help with her respiratory issues. We just don't want to put Trinity through any more trauma if we don't have to. Please pray that we make the best decision!

Things are going good here. Trinity is enjoying the loaner wheelchair that we got from the school. We hope to get hers in a couple months! She also got to visit the school last week and play with some fun things like a smart board. She loved it!!! Mom is not ready for this next step, but I know the day is coming :(

21 Pounds!!!

Could it be real?? Yes it is!! Trinity has finally, after almost 2 years, gained weight and weighs more then she has ever weighed!!! This is very exciting news and reassures us why we went ahead with the feeding tube. Although she still vomits she is gaining weight and that's great news! Now all we need to do is figure out why she still has vomiting issues, but hopefully that will be figured out soon.

I will admit I am getting pretty bad about updating on the blog, so please be patient with me as life keeps getting busier.

Trinity is doing really good. She continues to get her feedings at night through her g-tube and takes a bottle during the day. We are doing a lot more time in her TLSO and getting her back in her stander after not spending that much time in it this summer. Trinity got a loaner wheelchair from the school until we get her own in a few months. Our most challenging thing right now is trying to get her used to the mask she needs to wear when hooked up to a c-pap machine. She's scared to death of it, but hopefully with time we can get her used to it. She has to go see an ENT in a couple weeks to look at her atnoids. They think they might be enlarged and may need removed. This could play a role in her breathing at night while she is sleeping and could help reduce the amount she would need through her c-pap machine. She had a physical therapy evaluation done on Thursday and it went pretty good. She will be getting more therapy through Gillette hopefully in the next month.

Last weekend Aubree had the privilege of being a very beautiful flower girl in Kayla (Jansen) and Scott Kelly's wedding. It was a beautiful wedding and feel very blessed to have been a part of such an amazing day for such a wonderful couple. Aubree has talked about it all week and I think we will hear about it for a long time!