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
Saturday, December 11, 2010
Wednesday, October 20, 2010
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 :(
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 :(
Saturday, October 2, 2010
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!
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!
Thursday, August 26, 2010
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!!
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!!
Tuesday, August 17, 2010
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!
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!
Monday, July 12, 2010
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!!
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!!
Friday, July 9, 2010
Day 3
The G-Tube is in and everything went great! Trinity is currently laying in her bed enjoying the morphine and watching some cartoons. Everything went great during surgery and Trinity is doing really well with pain and the adjustment of having a foreign thing sticking out of her abdomen. They are doing antibiotics through her IV over the next 24hrs to prevent her shunt from getting infected and then hopefully tomorrow morning we will be able to start some slow feeds on her feeding tube and be able to go home Sunday afternoon or Monday morning.
It truly amazes me everytime we are in the hospital and the amazing people that we meet. Today I met a mother of a child with cerebral palsy and has serious seizures. His name is Will and he is an amazing little boy that has amazed a lot of people in his life. They almost lost Will on Friday night to a simple mistake by the hospital staff, but by the grace of God he is here today and fighting hard to go home soon. This family has faced many trials in Will's 3 years of life, but they have an amazing strength. A doctor put it very well to me yesterday "Being at Gillette makes me feel out of place instead of the patients feeling out of place!" and that statement is so true. I love that Trinity gets to come to a place that makes her feel comfortable for who she is and without the stares. Trinity can wheel down the hallway and see all her friends wheeling along side her and it feels good!
It truly amazes me everytime we are in the hospital and the amazing people that we meet. Today I met a mother of a child with cerebral palsy and has serious seizures. His name is Will and he is an amazing little boy that has amazed a lot of people in his life. They almost lost Will on Friday night to a simple mistake by the hospital staff, but by the grace of God he is here today and fighting hard to go home soon. This family has faced many trials in Will's 3 years of life, but they have an amazing strength. A doctor put it very well to me yesterday "Being at Gillette makes me feel out of place instead of the patients feeling out of place!" and that statement is so true. I love that Trinity gets to come to a place that makes her feel comfortable for who she is and without the stares. Trinity can wheel down the hallway and see all her friends wheeling along side her and it feels good!
G-Tube
Trinity will be going into surgery today @ 2:00 for her G-Tube placement. The surgeon came to see us this morning and was able to get Trintiy into surgery today, which is really amazing considering the surgery schedule. They will place the tube and she will probably be in the hospital until Sunday. It has been a real big whirlwind since finding this out, but the team of doctors feel very confident in their decision to place the tube for Trinity. It is hard to put so much trust into doctors, but we don't always have a choice other then to trust. Please continue to lift her up in your prayers and please pray for the doctors and for Shannon and I. This has been nerve racking for us and just making sure that we are making the right decisions. I will try and update tonight after things have settled down.
Thursday, July 8, 2010
Day 2
It was a long night with wake ups about every hour, we are both pretty tired and hoping to get a good nap today! They took Trinity off of the medicines (to help clean her out) about 9:30 this morning and we are going to start her on the Pediasure in the next 30 minutes through the NG-Tube. The doctors want to do this for 48 hours and evaluate her on how she does with the feeding tube and if she has any behavioral changes with the increase of nutrition and with her colon being cleaned out. If all goes well we will probably be doing the G-Tube depending on when the surgeon can fit her into the surgery schedule, the surgeon will come see her tomorrow and we will go from there. They also did an x-ray of her leg today and we will know tomorrow if the brace gets to come off.
She has really enjoyed the morning so far. They gave her an hour break from being hooked up to the machines and let her ride in her caster cart for awhile. She had so much fun and played hide-n-seek from me in the hallway of the hospital. At least today has been a much better day so far!
She has really enjoyed the morning so far. They gave her an hour break from being hooked up to the machines and let her ride in her caster cart for awhile. She had so much fun and played hide-n-seek from me in the hallway of the hospital. At least today has been a much better day so far!
Wednesday, July 7, 2010
Colon Cleanse
I have a lot to update all of you on. Trinity is currently in the hospital at Gillette for a colon cleanse and a trial with a NG-Tube (feeding tube going in through the nose). We met with the GI doctor about a month ago and they felt that she needed to have a colon cleanse to totally clean her out and see how she does with eating after that. Their concern with her is dehydration because she don't take a lot of fluids. They are really wanting to do a G-tube, but Shannon and I are trying to make sure that is the best decision for Trinity first. Trinity was admitted today at 9:00 am where they placed a NG-Tube to get the medicine for her cleanse, once she is cleaned out they will start feeding her through the tube with Pediasure (same thing she eats in a bottle at home). At that point we need to make a decision whether or not to go ahead with the G-Tube. We are needing lots of prayers in making the right decision. Trinity has already had a long day and it is only 5:00. They had a really hard time getting an IV in and finally had to do it in her neck because she was so dehydrated.
On another note she also has a fracture in her left leg. About 3 weeks ago her leg swelled up and was really stiff. We took her into Gillette where they found a fracture just above her knee. Luckily it wasn't any higher and she came home with a stabilizer cast that looks like a brace. She is suppose to wear it for 3 weeks and we are crossing our fingers that it will come off tomorrow or Friday. We are unsure what happened, but because she has osteoporosis anything from moving her leg wrong or someone falling on her could have caused this. They explained that this will probably be the first of many.
Other then all of these things Trinity has really been enjoying her summer so far. We have had family up from Iowa and have spent a lot of time at the beach, where Aubree and Trinity love the water!
On another note she also has a fracture in her left leg. About 3 weeks ago her leg swelled up and was really stiff. We took her into Gillette where they found a fracture just above her knee. Luckily it wasn't any higher and she came home with a stabilizer cast that looks like a brace. She is suppose to wear it for 3 weeks and we are crossing our fingers that it will come off tomorrow or Friday. We are unsure what happened, but because she has osteoporosis anything from moving her leg wrong or someone falling on her could have caused this. They explained that this will probably be the first of many.
Other then all of these things Trinity has really been enjoying her summer so far. We have had family up from Iowa and have spent a lot of time at the beach, where Aubree and Trinity love the water!
Sunday, May 16, 2010
Urologist
On Thursday Trinity had an appointment with her urologist. This was actually the first time that we had met him. Trinity had a urodynamic test done in December before her untethering surgery and that came back good, so they didn't want to see Trinity for another 6 months.
Dr. Vandersteen, urologist, is a partner with the other urologist that we have seen before at Shriners so it was nice that we didn't have to explain Trinity's situation all over again. He explained that there are a few different types of bladders and Trinity has one that has weak muscles on the outside causing her urine to constantly leak out and not strong enough to hold in her urine. This is not a problem at this time in her life, but when Trinity starts to get older and asks to get out of diapers he recommended at that time that we think about doing a surgery to tighten the muscle on the outside so the urine can not get out and she would have to learn to cath herself. This is defiantly something that we don't have to think about right now, but down the road. We are just happy that at this time she has only had one bladder infection in 2 years.
As for her bowel we are still trying to figure that out. Trinity has issues with constipation and we can not get it under control. We are using Miralax and suppositories and they both are not helping. The Miralax is not near effective because we put it into her bottle of Pediasure and since she don't eat a whole bottle at once she is not getting the full effect of the medicine. They want us to discuss the constipation with the GI doctor next month. An option that we have is to do a surgery that would help flush the bowel on a daily basis, but we want to try to figure this out without surgery if possible.
It was very enjoyable to have a doctor that don't want to play God with our daughter and knows who God is! He made the statement that after I asked the question, "What are the chances that Trinity would learn to urinate on her own when she is older and she won't need diapers or the surgery?" his response to me was that a miracle can happen, but God performs those! That statement is huge to us as so many doctors want to act like they can fix our daughter and perform miracles and really they can't perform the miracle, that is up to God!
We are really enjoying this nice weather and today we got to have a picnic at the park and the girls love playing at the park! Trinity loves being outside and it brings so much joy to our lives to watch her enjoy herself as she plays with Aubree and other kids around her. Really good Extreme Home Makeover tonight on TV that had a 6 year old boy with spina bifida. Hope you got a chance to watch it, the mom made the statement how much joy he brings to them and those around him, Shannon and I have the same feelings with Trinity.
Dr. Vandersteen, urologist, is a partner with the other urologist that we have seen before at Shriners so it was nice that we didn't have to explain Trinity's situation all over again. He explained that there are a few different types of bladders and Trinity has one that has weak muscles on the outside causing her urine to constantly leak out and not strong enough to hold in her urine. This is not a problem at this time in her life, but when Trinity starts to get older and asks to get out of diapers he recommended at that time that we think about doing a surgery to tighten the muscle on the outside so the urine can not get out and she would have to learn to cath herself. This is defiantly something that we don't have to think about right now, but down the road. We are just happy that at this time she has only had one bladder infection in 2 years.
As for her bowel we are still trying to figure that out. Trinity has issues with constipation and we can not get it under control. We are using Miralax and suppositories and they both are not helping. The Miralax is not near effective because we put it into her bottle of Pediasure and since she don't eat a whole bottle at once she is not getting the full effect of the medicine. They want us to discuss the constipation with the GI doctor next month. An option that we have is to do a surgery that would help flush the bowel on a daily basis, but we want to try to figure this out without surgery if possible.
It was very enjoyable to have a doctor that don't want to play God with our daughter and knows who God is! He made the statement that after I asked the question, "What are the chances that Trinity would learn to urinate on her own when she is older and she won't need diapers or the surgery?" his response to me was that a miracle can happen, but God performs those! That statement is huge to us as so many doctors want to act like they can fix our daughter and perform miracles and really they can't perform the miracle, that is up to God!
We are really enjoying this nice weather and today we got to have a picnic at the park and the girls love playing at the park! Trinity loves being outside and it brings so much joy to our lives to watch her enjoy herself as she plays with Aubree and other kids around her. Really good Extreme Home Makeover tonight on TV that had a 6 year old boy with spina bifida. Hope you got a chance to watch it, the mom made the statement how much joy he brings to them and those around him, Shannon and I have the same feelings with Trinity.
Wednesday, May 12, 2010
Too Busy?!?!
Over lunch yesterday with Shannon I had stated that I hadn't posted anything since March, his response was, we probably won't have anybody that reads the blog anymore, but even if there is just one of you that reads this that is okay with me!
Trinity has been a busy little girl and without boring you too much I will try to keep this post as short as I can.
Neurosurgeon:
Things look really good for right now for Trinity. She has no issues that need to be taken care of with the Neurosurgeon. He does want her to see a sleep doctor and hopefully we can get some help with her sleeping, since she wakes up 2-3 times a night! With Chiari they have sleep apnea and Dr. Partington feels that is why she is struggling sleeping. Other then that he feels like she can go 8 months without seeing him, which is HUGE!
Orthopedic Surgeon:
Since the last post Trinity now wears a TLSO (abdomen brace) and AFO (ankle & foot braces). She has some nice new sneakers and loves it when people ask her about her new shoes! So far we are doing really good with the braces. She wears the AFO's most of the day and the TLSO about 6-8hrs. They would like her to get more time in the TLSO, but we are working on that with her vomiting. They have done another x-ray with her in the brace and they didn't see a huge improvement, but they are hoping the more time she spends in it the better the improvement. They would like to try to get her to continue to grow before thinking about surgery. She is still at a 67degree curve and they don't want it to get any worse. So we are crossing our fingers and praying that we can get through a couple more years. We will see the surgeon in August and at that time they will recheck her curve and see where she is at.
Feeding Clinic:
We have finally got into the feeding clinic and things are starting to move in the right direction. Yesterday Trinity had an Upper GI and Swallow Study done. The GI showed that she has some reflux and the swallow study looked really good. We don't know a whole lot until we see the GI doctor in June. They would like us to consider a G-Tube that would be placed into her stomach. This way we could control her eating and know how much she is getting. This is something Shannon and I are considering, but it really is up to the GI doctor and what she feels Trinity needs. She starts some speech and occupational therapy in a couple weeks through Gillette and that could consist of 1-2 visits there a week. This is going to be very time consuming with her other therapy that she gets through the school, but she needs to learn how to eat. It is kinda weird her mom is trying to get thin and she is trying to gain some weight, too bad I can't just give her my weight, now that would be nice!
They also talked about her teeth and the fact that they are turning brown. This is because of the Pediasure and the amounts of sugar that is in it. So we are working with her on brushing her teeth, this is not going real well since she gags when things are in her mouth, so please pray that they gagging would stop and we can make some progress on the teeth brushing. They feel really good about her size and although she is below what other kids her age are at shes at a good weight for her height.
Wheelchair and Stander:
The school is looking into some wheelchairs for Trinity. It will probably not be until August or September when she officially gets one. There is alot of trying and making sure that we find the right one to fit her needs and body type.
She is officially using a stander! This was a big step for her and she has worked her way up to an hour at a time. She can be in it 2-3 times a day. She really enjoys it and she has grown a 1/2 inch since using it!
Things have really been going pretty good with Trintiy. She loves being outside and playing with her sister and the neighbor girls! We are trying to find a tryke for her that she can use her hands, but the price of them are so high. We are hoping the school can get one or we have been looking on Craigslist and Ebay. Daddy got her a helmet last night, so she just needs some wheels!
We are reminded everyday how truly blessed we are! Shannon and I have a great marriage with two beautiful daughters that God has entrusted us with. We are learning to focus more on the beauty and joy of life instead of all the negatives! I received a very special gift on Mother's Day from someone that probably don't realize the gift she gave me. She shared with me that she prays for Trinity everyday and that she recently had a dream with Trinity and Jesus in it. She told me that Jesus is going to do great things with Trinity and she wants to be there to watch. What a great gift! It brought me to tears and gave me so much hope in knowing that God has big plans for our little girl and despite the trials that she faces there is JOY in all of this! Thank you sooo much Cathy Lund, for sharing that with me, it means the world to Shannon and me!
I promise I am going to start updating more and I am going to take some time and put some recent photos of Trinity on her soon!
Trinity has been a busy little girl and without boring you too much I will try to keep this post as short as I can.
Neurosurgeon:
Things look really good for right now for Trinity. She has no issues that need to be taken care of with the Neurosurgeon. He does want her to see a sleep doctor and hopefully we can get some help with her sleeping, since she wakes up 2-3 times a night! With Chiari they have sleep apnea and Dr. Partington feels that is why she is struggling sleeping. Other then that he feels like she can go 8 months without seeing him, which is HUGE!
Orthopedic Surgeon:
Since the last post Trinity now wears a TLSO (abdomen brace) and AFO (ankle & foot braces). She has some nice new sneakers and loves it when people ask her about her new shoes! So far we are doing really good with the braces. She wears the AFO's most of the day and the TLSO about 6-8hrs. They would like her to get more time in the TLSO, but we are working on that with her vomiting. They have done another x-ray with her in the brace and they didn't see a huge improvement, but they are hoping the more time she spends in it the better the improvement. They would like to try to get her to continue to grow before thinking about surgery. She is still at a 67degree curve and they don't want it to get any worse. So we are crossing our fingers and praying that we can get through a couple more years. We will see the surgeon in August and at that time they will recheck her curve and see where she is at.
Feeding Clinic:
We have finally got into the feeding clinic and things are starting to move in the right direction. Yesterday Trinity had an Upper GI and Swallow Study done. The GI showed that she has some reflux and the swallow study looked really good. We don't know a whole lot until we see the GI doctor in June. They would like us to consider a G-Tube that would be placed into her stomach. This way we could control her eating and know how much she is getting. This is something Shannon and I are considering, but it really is up to the GI doctor and what she feels Trinity needs. She starts some speech and occupational therapy in a couple weeks through Gillette and that could consist of 1-2 visits there a week. This is going to be very time consuming with her other therapy that she gets through the school, but she needs to learn how to eat. It is kinda weird her mom is trying to get thin and she is trying to gain some weight, too bad I can't just give her my weight, now that would be nice!
They also talked about her teeth and the fact that they are turning brown. This is because of the Pediasure and the amounts of sugar that is in it. So we are working with her on brushing her teeth, this is not going real well since she gags when things are in her mouth, so please pray that they gagging would stop and we can make some progress on the teeth brushing. They feel really good about her size and although she is below what other kids her age are at shes at a good weight for her height.
Wheelchair and Stander:
The school is looking into some wheelchairs for Trinity. It will probably not be until August or September when she officially gets one. There is alot of trying and making sure that we find the right one to fit her needs and body type.
She is officially using a stander! This was a big step for her and she has worked her way up to an hour at a time. She can be in it 2-3 times a day. She really enjoys it and she has grown a 1/2 inch since using it!
Things have really been going pretty good with Trintiy. She loves being outside and playing with her sister and the neighbor girls! We are trying to find a tryke for her that she can use her hands, but the price of them are so high. We are hoping the school can get one or we have been looking on Craigslist and Ebay. Daddy got her a helmet last night, so she just needs some wheels!
We are reminded everyday how truly blessed we are! Shannon and I have a great marriage with two beautiful daughters that God has entrusted us with. We are learning to focus more on the beauty and joy of life instead of all the negatives! I received a very special gift on Mother's Day from someone that probably don't realize the gift she gave me. She shared with me that she prays for Trinity everyday and that she recently had a dream with Trinity and Jesus in it. She told me that Jesus is going to do great things with Trinity and she wants to be there to watch. What a great gift! It brought me to tears and gave me so much hope in knowing that God has big plans for our little girl and despite the trials that she faces there is JOY in all of this! Thank you sooo much Cathy Lund, for sharing that with me, it means the world to Shannon and me!
I promise I am going to start updating more and I am going to take some time and put some recent photos of Trinity on her soon!
Tuesday, March 9, 2010
Appointments/Updates/Birthday
Time just seems to be flying by lately. It has been two weeks since Trinity turned 2 and I have not been real good about updating the blog, so I apologize. We have been really busy with appointments, therapy, and just life in general!
Trinity turned two on February 21st! She had a fantastic birthday spent with family and friends. We did a ice cream cake this year and she loved it. Because Trinity can't eat solids, ice cream is one thing that she tolerates, she must get that from her dad?!? She got some fantastic toys that I am not sure if her sister plays with them more or if Trinity does. What an amazing two years it has been. Sometimes feels like a roller coaster ride, but I wouldn't have it any other way.
Trinity has had a few appointments lately. We finally got in for her TLSO fitting and she will get that next week Wednesday. I was amazed at how well she looked in just the cast, I can't wait to see her in the brace. This one will be different from her last one. It will be two pieces and should give her more support. They are going to see how well she tolerates it and would like to see her wearing it most of the day and night. Eventually they might look at doing a brace that goes from the armpits down to her knees while she sleeps. We seen Dr. Walker and Dr. Koop (orthopedic surgeons) yesterday. They are going to work as a team on Trinity instead of just having one doctor. Trinity is a very hard and rare case and they feel more comfortable having two opinions instead of one. I will admit it is hard sometimes trusting the opinions of doctors and wondering who you should trust. We have heard so many different opinions on Trinity and her scoliosis that sometimes we are confused by what the plan is next for her. Just to remind you back in July Trinity had a curve of 56 degrees and today in the same position she is at a 67 degree. From history it looks like about every 6 months Trinity is jumping 10 degrees in her curve. With that being said they are going to try the brace and hope that it does the trick of slowing down the curve so we can get a few more years in before having to do a surgery. If they see that the brace is not working they would like to use all the options before doing surgery. Mostly because of the size Trinity is but also because it works better when the kids are older. So it is going to be a waiting and guessing game from here on out with Trinity. They will see her again in about 6 weeks and do another x-ray to see what she looks like in her TLSO and what the curve looks like without it.
On Thursday we will see a PM&R doctor that will evaluate Trinity and see her timeline for a wheelchair, bracing of the legs, and some other things. I am excited to see what this doctor has to say.
We are also waiting to get into the feeding clinic, but for now the school has provided a speech therapist (that also has a medical background) and we love her!! She is going to try and get approved to see Trinity at least twice a week. She will work with her eating and speech. So we are crossing our fingers that this works for Trinity and that Rachel can help us figure out what is going on with Trinity.
On top of all of this Trinity has a ton of evaluations through the schools for her therapy. So things have been really crazy here lately and will be the next couple of weeks.
Sorry for the length of the post, but I had too much to update on. We would really appreciate your prayers and that God would work miracles with the new TLSO. We continue to trust God through all of this and know that His plan for Trinity's life is much better then ours!
Trinity turned two on February 21st! She had a fantastic birthday spent with family and friends. We did a ice cream cake this year and she loved it. Because Trinity can't eat solids, ice cream is one thing that she tolerates, she must get that from her dad?!? She got some fantastic toys that I am not sure if her sister plays with them more or if Trinity does. What an amazing two years it has been. Sometimes feels like a roller coaster ride, but I wouldn't have it any other way.
Trinity has had a few appointments lately. We finally got in for her TLSO fitting and she will get that next week Wednesday. I was amazed at how well she looked in just the cast, I can't wait to see her in the brace. This one will be different from her last one. It will be two pieces and should give her more support. They are going to see how well she tolerates it and would like to see her wearing it most of the day and night. Eventually they might look at doing a brace that goes from the armpits down to her knees while she sleeps. We seen Dr. Walker and Dr. Koop (orthopedic surgeons) yesterday. They are going to work as a team on Trinity instead of just having one doctor. Trinity is a very hard and rare case and they feel more comfortable having two opinions instead of one. I will admit it is hard sometimes trusting the opinions of doctors and wondering who you should trust. We have heard so many different opinions on Trinity and her scoliosis that sometimes we are confused by what the plan is next for her. Just to remind you back in July Trinity had a curve of 56 degrees and today in the same position she is at a 67 degree. From history it looks like about every 6 months Trinity is jumping 10 degrees in her curve. With that being said they are going to try the brace and hope that it does the trick of slowing down the curve so we can get a few more years in before having to do a surgery. If they see that the brace is not working they would like to use all the options before doing surgery. Mostly because of the size Trinity is but also because it works better when the kids are older. So it is going to be a waiting and guessing game from here on out with Trinity. They will see her again in about 6 weeks and do another x-ray to see what she looks like in her TLSO and what the curve looks like without it.
On Thursday we will see a PM&R doctor that will evaluate Trinity and see her timeline for a wheelchair, bracing of the legs, and some other things. I am excited to see what this doctor has to say.
We are also waiting to get into the feeding clinic, but for now the school has provided a speech therapist (that also has a medical background) and we love her!! She is going to try and get approved to see Trinity at least twice a week. She will work with her eating and speech. So we are crossing our fingers that this works for Trinity and that Rachel can help us figure out what is going on with Trinity.
On top of all of this Trinity has a ton of evaluations through the schools for her therapy. So things have been really crazy here lately and will be the next couple of weeks.
Sorry for the length of the post, but I had too much to update on. We would really appreciate your prayers and that God would work miracles with the new TLSO. We continue to trust God through all of this and know that His plan for Trinity's life is much better then ours!
Saturday, February 6, 2010
Frozen Tundra
Okay, I am officially sick of winter. We have had enough snow and now I hear that we are going to get more on Monday, UGH! I really need a vacation somewhere warm!!
Other then me hating this weather, things are going really good here. Trinity is staying healthy, crossing fingers, and her eye looks amazing. She still has a little redness, but it has healed very nicely. She don't need to see Dr. P for 3 months.
There is not much new to report. She has a lot of appointments in March and has a hearing test this month. We are still waiting to get her TLSO fitted, kinda frustrating, but I guess if anything over the past two years, I have learned to be patient (with doctors). Hopefully we can get that done this week so she can start wearing it again.
I can't believe it has almost been two years since God blessed us with an amazing little girl. I never knew there would be so many ups and downs, but everyone of them has been a HUGE blessing.
Other then me hating this weather, things are going really good here. Trinity is staying healthy, crossing fingers, and her eye looks amazing. She still has a little redness, but it has healed very nicely. She don't need to see Dr. P for 3 months.
There is not much new to report. She has a lot of appointments in March and has a hearing test this month. We are still waiting to get her TLSO fitted, kinda frustrating, but I guess if anything over the past two years, I have learned to be patient (with doctors). Hopefully we can get that done this week so she can start wearing it again.
I can't believe it has almost been two years since God blessed us with an amazing little girl. I never knew there would be so many ups and downs, but everyone of them has been a HUGE blessing.
Friday, January 29, 2010
Strabismus Repair
Trinity had her eye surgery yesterday. Dr. P decided to just do the left eye. She felt that it was the muscle that was the tightest and since Trinity will probably need this surgery in the future because of her spina bifida, she wanted to hold off on the right eye. Trinity did great and all the doctors commented on how strong she is. Her eye is a little red in the corner and swollen, but overall she is doing great and I am very impressed on how well she is doing. She sure is a fighter!!
Thank you for praying for her yesterday, we can always feel your support and prayers. I am very thankful that my parents got to come up yesterday, it is always nice to have family here.
Miranda
Thank you for praying for her yesterday, we can always feel your support and prayers. I am very thankful that my parents got to come up yesterday, it is always nice to have family here.
Miranda
Wednesday, January 20, 2010
Change in Schedule
Trinity did not have her eye surgery today, it is now scheduled for next Thursday, January 28th @ 11:00am. This will be an out-patient procedure. Until then we are having to dilate her right eye every morning until surgery. After checking her eyes last week they noticed that she is preferring her right eye over her left eye. So until she has they surgery they want her to be using her left eye more. She really don't like this, but since she won't keep a patch on her eye it is the only way.
Lots going on in our lives right now. Trinity had an Orthopedic appointment on Monday. He checked her hips, did an x-ray of her spine, and then checked her spine. Hips: We talked about her hips popping when we are changing her or playing with her legs. He does not feel like it is coming out of the socket, but can feel a little popping. He is not overly concerned with the hips and actually feels that most kids are better off not doing anything (surgery) because it ends up causing more damage then good. He is going to keep an eye on them, but will leave them alone for now. Spine: The x-ray shows that the scoliosis has increased significantly since the last x-ray. They can't really judge though off of the x-rays because of the inconsistency of how they are doing the x-rays. For instance the last time she had an x-ray it showed her curve at 36 degrees, but this time it was at 84 degrees, a HUGE difference. I am not real sure why they don't position her the same way everytime they do an x-ray, but I am not the doctor either. He checked to see how flexible the spine is when positioning her in a more upright position. He feels that it is somewhat soft, but not soft enough to get it completely straight. He wants to revamp her current TLSO (brace) and see how that works. He would also like to try something in her cart that would keep her in a more upright positon, but because that is not our property it is the schools, we are unable to do that. He wants her in the brace as much as she will tolerate, in hopes that she will keep it on all the time including bedtime. He will then recheck her in 6-8 weeks and see how the brace is working. At that time he is going to do a new x-ray with her laying down and see how straight they can get her spine with positioning her. He feels that we are probably looking at some form of surgery (growing rods) in the next 6-18mths. Honestly that is not what we were expecting. We really thought that with the untethering and the hopes that the brace works she would not need a surgery for a couple years. That is not the case. With all of this being said, we also have the problem with Dr. Walker has never done a surgery like this on a child as small as Trinity. Trinity is a very rare case and they don't see children this small needing the surgery at such an early age. He has done it on a 2 1/2 year old and that is the only one in the toddler years. The problem with Trinity is her weight and height. Trinity is very small for her age and they are concerned about doing a surgery on her while she is so small. This brings a lot of concern to Shannon and I. We did not know that he was so inexperienced with this surgery in young children. There is a lot to think about after this appointment. Trinity still needs to be refitted for her brace and we are really hoping that the brace is going to do the trick for awhile and that we can get her a few years down the road before looking at surgery. God is the GREAT PHYSICIAN!!
We could really use your prayers. We really want the brace to solve the problem for now, but if it don't we want to make sure we are putting our daughter into the right hands (what doctor).
Trinity is doing really good otherwise. She still continues to get some form of a cold about every 2-3 weeks. We are ready for this cold season to be over with so she can sleep at night (and mom too)! Too bad we still have about 2 1/2 more months of this stuff :(
Our thoughts and prayers go out to Haiti and all the people that have lost their homes and their family. So much tragedy and loss. It really makes you think about how much we have and how little we really could live without. PRAY
Lots going on in our lives right now. Trinity had an Orthopedic appointment on Monday. He checked her hips, did an x-ray of her spine, and then checked her spine. Hips: We talked about her hips popping when we are changing her or playing with her legs. He does not feel like it is coming out of the socket, but can feel a little popping. He is not overly concerned with the hips and actually feels that most kids are better off not doing anything (surgery) because it ends up causing more damage then good. He is going to keep an eye on them, but will leave them alone for now. Spine: The x-ray shows that the scoliosis has increased significantly since the last x-ray. They can't really judge though off of the x-rays because of the inconsistency of how they are doing the x-rays. For instance the last time she had an x-ray it showed her curve at 36 degrees, but this time it was at 84 degrees, a HUGE difference. I am not real sure why they don't position her the same way everytime they do an x-ray, but I am not the doctor either. He checked to see how flexible the spine is when positioning her in a more upright position. He feels that it is somewhat soft, but not soft enough to get it completely straight. He wants to revamp her current TLSO (brace) and see how that works. He would also like to try something in her cart that would keep her in a more upright positon, but because that is not our property it is the schools, we are unable to do that. He wants her in the brace as much as she will tolerate, in hopes that she will keep it on all the time including bedtime. He will then recheck her in 6-8 weeks and see how the brace is working. At that time he is going to do a new x-ray with her laying down and see how straight they can get her spine with positioning her. He feels that we are probably looking at some form of surgery (growing rods) in the next 6-18mths. Honestly that is not what we were expecting. We really thought that with the untethering and the hopes that the brace works she would not need a surgery for a couple years. That is not the case. With all of this being said, we also have the problem with Dr. Walker has never done a surgery like this on a child as small as Trinity. Trinity is a very rare case and they don't see children this small needing the surgery at such an early age. He has done it on a 2 1/2 year old and that is the only one in the toddler years. The problem with Trinity is her weight and height. Trinity is very small for her age and they are concerned about doing a surgery on her while she is so small. This brings a lot of concern to Shannon and I. We did not know that he was so inexperienced with this surgery in young children. There is a lot to think about after this appointment. Trinity still needs to be refitted for her brace and we are really hoping that the brace is going to do the trick for awhile and that we can get her a few years down the road before looking at surgery. God is the GREAT PHYSICIAN!!
We could really use your prayers. We really want the brace to solve the problem for now, but if it don't we want to make sure we are putting our daughter into the right hands (what doctor).
Trinity is doing really good otherwise. She still continues to get some form of a cold about every 2-3 weeks. We are ready for this cold season to be over with so she can sleep at night (and mom too)! Too bad we still have about 2 1/2 more months of this stuff :(
Our thoughts and prayers go out to Haiti and all the people that have lost their homes and their family. So much tragedy and loss. It really makes you think about how much we have and how little we really could live without. PRAY
Wednesday, January 6, 2010
Here is to a New Year!!
Things are good in the Arthur household. We had a fantastic Christmas spent in Iowa with family and friends. Both the girls got way to many toys, but they are loving their play time together! We were not all that crazy to come home to 16 inches of snow and below 0 temps, but I guess that is what we get when we live in Minnesota.
Trinity is doing pretty good. She got her stitches out before we left for Iowa and her incision looks great! Trinity has a busy month in January with many doctor appointments and yet another surgery. Here is the rundown: Jan. 11th-Eye Doctor, Jan. 18th-Dr. Walker(Orthopedic Surgeon), Jan. 21st-Eye Surgery, and Jan 27th-Eye Doctor checkup. This is what is on the schedule so far, she also has a checkup with the Neurosurgeon sometime this month (when I called to schedule that they told me it would be June, I asked them if they were crazy, they are going to talk to Dr. Partington and get her fit in).
I can't really tell you that I notice any difference in Trinity since the surgery. I am not real sure what we are suppose to see, but hopefully when we meet with Dr. Walker things will start to look up for Trinity. She is playing very well and loving all her new toys. The therapists are very happy with where Trinity is and the development that she has made in the year that they have seen her. We continue to have them come to our house twice a week and Trinity actually looks forward to seeing them!
Aubree started back at preschool and was very excited to see all her friends and teachers. Shannon is busy at work and I am busy being the two best things in the world, a wife and mom! My friend Amanda recently quit her job and is staying home full-time with her daughter Paige, we are looking forward to getting together with them and having some fun play dates.
We hope you all had a blessed Christmas and a Happy New Year!! (Hopefully your resolutions are lasting longer then mine did!)
Love~The Arthur's
Trinity is doing pretty good. She got her stitches out before we left for Iowa and her incision looks great! Trinity has a busy month in January with many doctor appointments and yet another surgery. Here is the rundown: Jan. 11th-Eye Doctor, Jan. 18th-Dr. Walker(Orthopedic Surgeon), Jan. 21st-Eye Surgery, and Jan 27th-Eye Doctor checkup. This is what is on the schedule so far, she also has a checkup with the Neurosurgeon sometime this month (when I called to schedule that they told me it would be June, I asked them if they were crazy, they are going to talk to Dr. Partington and get her fit in).
I can't really tell you that I notice any difference in Trinity since the surgery. I am not real sure what we are suppose to see, but hopefully when we meet with Dr. Walker things will start to look up for Trinity. She is playing very well and loving all her new toys. The therapists are very happy with where Trinity is and the development that she has made in the year that they have seen her. We continue to have them come to our house twice a week and Trinity actually looks forward to seeing them!
Aubree started back at preschool and was very excited to see all her friends and teachers. Shannon is busy at work and I am busy being the two best things in the world, a wife and mom! My friend Amanda recently quit her job and is staying home full-time with her daughter Paige, we are looking forward to getting together with them and having some fun play dates.
We hope you all had a blessed Christmas and a Happy New Year!! (Hopefully your resolutions are lasting longer then mine did!)
Love~The Arthur's
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