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!
Tuesday, March 9, 2010
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
Friday, December 18, 2009
Update/Pictures
Things are going pretty well for Trinity. She was suppose to have a checkup today, but she has a fever and a cold, are you surprised? (we sure aren't) Hopefully it is just a cold and nothing more, but we will see how tonight goes and if she is not better tomorrow we will take her in to see the doctor.
Trinity has amazed us with her recovery from surgery! She's doing GREAT and getting around just fine in her cart. She stopped taking pain relievers after Monday. I haven't got to see her back in almost a week because it still has the bandage on it, but there is no sign of leakage, which is great!
I wanted to post some pictures of Trinity from the hospital stay. One of the pictures is of Trinity in her bed and you can see the tree that she got from the family that donates them to the children in the hospital. We put it in her room and she loves looking at it at night when it is lite up!
Trinity has amazed us with her recovery from surgery! She's doing GREAT and getting around just fine in her cart. She stopped taking pain relievers after Monday. I haven't got to see her back in almost a week because it still has the bandage on it, but there is no sign of leakage, which is great!
I wanted to post some pictures of Trinity from the hospital stay. One of the pictures is of Trinity in her bed and you can see the tree that she got from the family that donates them to the children in the hospital. We put it in her room and she loves looking at it at night when it is lite up!
Tuesday, December 15, 2009
Trinity Home
Trinity got to come home Sunday night. This was very exciting for all of us including Trinity. She loves it when she can sleep in her own bed and be in the comfort of her own home. I would have to say I was also pretty excited to sleep in my own bed! Trinity is doing pretty good, just a little pain here and there, but for the most part she's doing remarkably well.
So much love and support was shown to our family while we were in the hospital. We are very grateful to have such wonderful family and friends. Thank you so much for your prayers during the surgery and Trinity's recovery.
So much love and support was shown to our family while we were in the hospital. We are very grateful to have such wonderful family and friends. Thank you so much for your prayers during the surgery and Trinity's recovery.
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