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!

Orthopedic

On Monday Trinity had her Orthopedic appointment @ Gillette. They did x-rays of her in the TLSO and her curve is 56 degrees. We are unsure what her curve is outside of the brace because they don't like to do too many x-rays because of all the radiation. This is good for now! I really hate to know what she looks like outside of the brace, but this definitely opened my eyes to how important it is to keep her in her TLSO as much as we can. It has been so hot out and with everything that has been going on this summer I just avoided putting it on her. At least this week we have had a cool down and no humidity so it has made it pretty comfortable for her which is nice. We really need to keep her in this 56 degree range and keep her from getting a any worse curve in her brace. I would like to avoid surgery for at least a few more years. And if it be God's will then I would love to see her make it to the age of 13! (maybe wishful thinking) Question for all you moms, if you have any "cute" onesies that are size 12mth or larger and want to get rid of them or sell them please let me know. Trinity has to wear a onesie to protect her skin and it is hard to find "cute" onsies in larger sizes.

On Tuesday we are going to order her new wheelchair and we are really excited about this! We have had one to trial for the past few weeks and Trinity just loves the freedom that it gives her and it is amazing how different she acts when she is in it. Unfortunately we won't get her new one for about 2-3 months so I am trying to find a place that will rent one to us until we get hers. I just don't feel right taking something away that makes her so happy!

Aubree starts preschool in a few weeks and she can not wait! Trinity also starts her new school year of therapy in a few weeks too. It is kinda exciting because we get to do some in a classroom this year and I am really excited to see how she interacts with the other kids.

I have a prayer request. We met a great family in the hospital and their son Will has been through a lot lately. He spent over 60 days in the hospital and just this past Saturday got out. They have been having a lot of issues with all his meds and it is messing with his heart rate and they are having to put him on oxygen a lot. Will has cerebral palsy and epilepsy. I was so unfamiliar with epilepsy until I met Will. He has numerous seizures in a day and they are trying to control it with these certain drugs, but unfortunately they cause side effects for him. I am asking that everyone that reads this lifts Will up in prayer and ask God's healing on Will. This little boy has been through a lot along with his family. Trinity and Aubree adore him and I am so thankful to have met them!


Shannon and the girls @ Vikings Training Camp!!

How are things going?

Well things are going pretty good here. Trinity has adjusted to having the g-tube and is taking her feedings overnight pretty good. We are discussing if we are going to do some daytime feedings or not. She seen the GI doctor a few weeks ago and they want to do a PH-Probe test where they stick a tube down her nose so they can see how much acid and fluid is coming up. We also discussed possibly doing a GJ (gastrojejunostomy) tube which would help with the vomiting, but would not allow her to have her overnight feedings. During the test in the hospital we will also see a pulmonologist to look at her lungs. They heard some wheezing in her lungs during this visit and are wondering if some of the vomiting is because of her lungs. They are going to put her on a stronger steroid and we will use the nebulizer 3-4 times a day. We also had our first experience of Trinity's tube falling out, luckily it was in the hospital and I had the doctors there to show me what to do. I now feel comfortable with it and don't have such an anxiety about it.

Trinity also had a sleep study done about 2 weeks ago. She had significant oxygen desaturations going down to 56%. I will not go into great details of the results but in a nutshell she had an abnormal study and they want to put her on a c-pap machine during the night. We will do another sleep study in about a month and at that time they will figure out the right amount that she needs on the machine while sleeping. For now we are trying to get her used to the mask, which has been a challenge. She gets very freaked out about it and we still haven't got her comfortable with putting it on her face so we will try and work at this and hope that in a few weeks she will be comfortable with it. They also want her to see a ENT doctor to possibly remove her atnoids.

On a good note we had her urology appointment and that all went great and her bladder is working well enough that we don't have to do anything at this time!

Trinity is doing some amazing things and I love every minute of it!! She got a trial wheelchair a couple weeks ago and she loves it! We are hoping to get her's ordered soon so we can get it before the end of the year. Shes also saying some words and although some of them are not real clear I can understand what she is trying to say. It makes me so happy that there are some positive things going on in Trinity's life and that we don't always have to look at the negative.

Trinity with Miss America at Gillette!

Trinity and her good friend Will!

1st Night Home

We are home and things are going pretty good. Last night was a challenge with so many new things to do, but I know that this is what is right for Trinity and I am sure the longer we do this the better things will be. The equipment arrived when we got home from the hospital Sunday night and the nurse was very good about explaining everything and making sure that we were comfortable using it. Although last night did not go as smoothly as I would have liked, I keep reminding myself that it was only the first night and it can only get better, right?

I am missing Aubree terribly, but hopefully will get to see her tomorrow!! She don't even want to come home, which don't make it easy for mommy or daddy. :-(

We are so thankful that once again God has pulled Trinity through a surgery and hospital stay without any complications, God is Good!!