Friday, December 30, 2011

Happy New Year

It has been awhile since we updated all of you. Trinity is doing well! She had a checkup a couple weeks ago and everything was healing well. She will see the doctor again in February and they are hoping to remove the upper neck part of her brace. They are planning on keeping her TLSO brace on her for probably another 3 months after that, if not longer. They will probably adjust the rod in about May. We are happy to say no problems with this rod so far! Dr. Walker was very happy with the results.
She's having a lot of issues with her bladder and having more frequent UTI's. So she's going to have some more testing done in February to see what is going on.
We had a great Christmas and excited about our New Year!!

Sunday, November 13, 2011

It's a Penny!!

Today they did another x-ray and the coin was located in the upper part of her stomach and showed no signs of moving in a 24 hour period, so Trinity's G-I doctor decided it was best to go in and retrieve it. At 11:00 this morning Trinity went in for her third surgery in 5 days. They put a scope down through her esophagus into her stomach and retrieved the "Penny". They thought it would have taken around an hour or so, but it only took 10 minutes! They were all quite impressed with the record time they found it in. She came out of surgery great and made her way back to her room around 12:15. We thought we were there for the night, but we got surprised with the news that Trinity would be discharged later in the afternoon!! We were excited to hear that.
So as I write this we are relaxing at home and Trinity is doing well. She's showing some pain and discomfort, but not surprised with the brace she has to wear. This is going to be a long 12 weeks that she has to wear it. We have the "penny" sitting in a container and will be putting it somewhere in safe keeping. The nurses were all excited to hear what the mystery object was in Trinity's stomach, when we got back up to the orthopedic floor. They were wishing they would have made bets on what it was. When we left today I was once again reminded how loved our little girl is. The nurses all line up as we leave and most giving her hugs and kisses. It feels so good to know that they all have so much love for our little angel!! When I asked Trinity if she was ready to go home, she told me no. I guess that just goes to show how much she loves Gillette and their nurses!!

Friday, November 11, 2011

No Coin

After 2 hours they were unable to remove the coin. They think when they stuck the scope down that it put pressure on the coin and pushed it down into her stomach. They are going to do an x-ray tomorrow morning and a consult with G-I doctors and see where to go from there. They also did a brohnoscopy while they were in there to make sure it wasn't in her airway and of course found nothing, but did find a lot of mucus that they suctioned out and are hoping that might help with her oxygen levels. They had to intubate her for this which they were hoping that they wouldn't have to do, so we are not real sure when we will get out of here.

Trinity the Piggy Bank!

We found out today that Trinity has a dime stuck in her esophagus! Crazy huh?!? They did an x-ray to check her rod and brace and found it on the x-ray. When they pulled up the x-ray from her last surgery they noticed that it was there then too. Unfortunately it was right over top of her rod and was not noticeable. So some time before her first spinal rod surgery she swallowed a dime. I am in total shock! Trinity does not put things in her mouth because they make her gag and choke so this completely shocks me! She will go down to surgery around 2:00 and is scheduled at 3:00 to have it removed by the ENT with a scope, alot like a endoscopy. We were hoping to go home today, but I am not thinking that is going to happen, plus she's having a hard time coming off of oxygen and has been dipping down into the low 80's for her oxygen levels. They are going to continue to watch it, but thinking it has alot to do with her being flat for the past 3 days, so we are crossing our fingers that's all it is. They are also still working out some minor details on her brace to make it as comfortable as possible. It is very restricting for her. I will try to take a picture of her once the brace is done and post it on here. It really breaks your heart to see her in it, but if it will keep the rod from coming detached again then we have to do what is best for Trinity.

Wednesday, November 9, 2011

Surgery Done

A little late on the update, but Trinity was done with surgery around 11:00 and did great! The surgery ended up taking around 3 hours. She's resting comfortably in her room and they are controlling her pain with Tylenol and Oxycodone. Every time she goes through something like this I am always amazed at how well she tolerates the pain and can handle using oral meds verses IV pain meds.
They only had to open a little less then half her back up to revise the rod. They used two hooks and then a tethered tape to wrap the rod around the bone. They feel like this will help keep it better secured. They are going to add to her TLSO (abdomen brace) an upper part that would extend up to her chin. This will give her added support so she don't bend forward and put pressure on the rod. This will be interesting since she has to wear the brace for 12 more weeks, but we will do what we need to to keep it from detaching again. For today she has to stay laying flat until they get the brace adjusted with the new attachment. They are hoping if all goes well she may get to go home Friday. We are crossing our fingers!
Thanks again for all the prayers and support!

Tuesday, November 8, 2011

Revision Surgery

Tomorrow morning, at 6:15, Trinity will be going back in for surgery to revise the current growing rod. The plan is to go in and use three hooks and wire to reattach the rod to the vertebrae. The surgery should take about 3 hours if everything goes as planned. Trinity has still been fighting a cold, but the pediatrician released her for surgery yesterday, so we hope there is no troubles tomorrow morning or during surgery. PRAY, PRAY, PRAY!!!
We are blessed to have our family here again to support us during this time. It always feels good to have everyone with us and I know Trinity enjoys seeing them as well.
My sister-in-law, Tasha, sent us this the other day and I would like to share it with you. "God isn't at work producing the circumstances I want, God is at work in the bad circumstances to produce the me He wants!" With all the difficult circumstances that we have been through with Trinity, I pray that through it all we are allowing God to work through Shannon and I, and glorifying Him in all things!
Thank you for all the prayers and support!!!

Monday, October 31, 2011

Spinal Rod Detached

Last week Trinity had an x-ray and appointment with Dr. Walker (Orthopedic Surgeon). Unfortunately it was not good news. Trinity's spinal rod has come detached from her vertebrae and is sticking out in the upper part of her back. Fortunately it has not caused any infection or broke through the skin. They had her scheduled to go in on this Wednesday to repair it, but she currently has a really bad cough and the surgeon and anesthesiologist don't feel comfortable putting her under with that going on. So we are looking at next Wednesday if she's healthy. The plan is to cut her open from the top to the mid part of her back and reattach the rod with three hooks verses two and also use some wire to wrap around the bone.
Definitely was not something we expected to happen this soon after surgery, but with Trinity I don't think anything happens by the books. She has handled it very well and has not complained of any pain. We are very thankful for that! This is very discouraging for us and hard to think about putting our daughter through yet another surgery, but we are reminded that God is "Bigger" than our problems and He will guide and protect her through yet another surgery.
We could really use your prayers. It is so difficult to watch your kids go through difficult circumstances and not be able to do anything. Can you imagine how God felt when He watched his son die on the cross to cover "our" sins? We are always reminded by people the impact that Trinity has on so many and that God is using her to "Glorify" Him. I have found myself picturing the day that Trinity enters His pearly gates and how they will interact with each other. The delight He will have in her as she "RUNS" to His open arms! "Oh Glorious Day!"

Sunday, October 16, 2011

Fun at Sunday School!!

Trinity had her first day back to Sunday School and was so excited to see her Guardian Angel, Shelly. In fact she woke up around 6:45 and wanted to get out of bed, but because she really needed to stay connected to her feeding pump she argued with me for awhile about getting up. Finally I told her if she stayed in bed and went back to sleep she would get to go to church and see Shelly, she closed her eyes and I didn't hear another thing from her until 8:00. She obviously loves Sunday School and Shelly!! She did great and was really happy to be back with some of her friends. Tomorrow she will go back to school and only go for an hour. The doctor don't want her going back full-time until after her 6 week check up. This will also help us ease her back into it. She got cards a couple weeks ago from her classmates and it brightened her day!

We still don't have any answers to her vomiting. She's still doing it, but we made a decision ourselves to start feeding her into her stomach instead of bypassing it. This way when she throws up she has something to come up and it's not so painful. Hopefully we will get a call from the doctors tomorrow so we can get something figured out.

Tuesday, October 11, 2011

Still Vomiting :(

We have a call into the hospital, but are still waiting to here back from them. Trinity is still vomiting and hasn't had much improvement. We tried feeding some Pedialyte through her tube the other night and it at least got some fluids in her stomach, but we still have the vomiting. I wouldn't be so concerned, but I don't want her to get dehydrated and the dry heaving breaks my heart to watch.
Other than that, Trinity is doing great! She wears her TLSO like she's suppose to and has handled the pain like a champ. She amazes me everyday. I think of how I handled having a c-section with two kids and the pain I felt, but Trinity don't show any pain and you would think after being cut from your neck down to your bottom you would have some extreme pain. We have one tough little girl!
The weather is beautiful here, but it is so hard to enjoy with Trinity. She gets so hot in her TLSO and one of the meds she's on overheats her body at times. But we are trying to get her out as much as she wants.
Aubree is loving school and is teaching us some Spanish, although her dad is pretty good at it. Trew is a very happy little boy. He's growing so fast and getting a personality.
We appreciate your prayers!! I often imagine the day when we can share these times with Trinity and show her how loved she is by all of you!

Saturday, October 8, 2011

Prayers Please!

We could really use your prayers. Trinity has been vomiting during the night not just once, but 2-3 times a night. Vomiting is not out of the ordinary for Trinity, but since she is now getting all her feeds straight into her small intestine, this makes vomiting a lot harder since she has nothing in her stomach. She wakes up with a blood curdling cry and by the time we get into her room she has either thrown up or is just starting to. She won't take a bottle anymore and before surgery that is the one thing we could get her to take orally. So with that said she's throwing up bile and mucous. I know what it feels like to have nothing left to throw up and what a horrible feeling it is. I can't imagine being in her little body that is healing from a major surgery and dealing with this.

How can you help? Please pray! We are puzzled and unsure if something major is wrong or if it is from her body still healing. Because vomiting is not out of the ordinary for Trinity we weren't all that concerned at first, but now that it has happened every night since Tuesday, we are starting to get concerned. If it continues throughout the weekend we will probably call the doctors on Monday. It is so difficult to be a parent and have all these concerns and worries all the time. That is where we have to give it to the Lord and "trust" in Him!!

On a positive note, Trinity is healing well. She has worn her TLSO like she's suppose to and handled it very well. She don't argue when she needs to spend time resting and being hooked up to her feeding tube. She's still not quite herself, but she tries to spend as much time as she can in her cart playing with Aubree.

The kids really enjoyed having Grandma Kathy here this week and were sad to see her go home today. She's been a huge help! Tomorrow their Nana, Paula, and Great Grandma Shearer will be here to stay with us and help out. We love having the extra hands and the kids love all the attention they get!!

Shannon and I would like to "thank" everyone for all your support and prayers over the last week. Trinity has received beautiful flowers, stuffed animals, Barbies, balloons, cards, and lots of phone calls. Everytime we go through something like this we are always so amazed to see the outpouring of love our family gets. We will never have enough words to express our gratitude!

Tuesday, October 4, 2011

We Are Home!!

It is so hard to believe, but Trinity is home and doing well! A 7-10 day stay in the hospital only turned into about a 5 day stay.
Before going home yesterday they ran a few tests, did an ultrasound of her kidneys, and an x-ray in her TLSO. Everything looked great. On Friday her urine showed evidence of a UTI so they are treating her for that. They wanted to make sure before sending her home that she didn't have urine going up into her kidneys since she was getting UTI's so frequently. But her kidneys look good.
We had to go home with twice the meds that she went in with and she has to be hooked up to her feeding tube 20 hours a day, which is going to be difficult when she becomes active again. They want to get some more fat on her little body.
On the way home yesterday from the hospital Shannon and I found ourselves again praising God for such a wonderful outcome. From thinking she would be in the PICU and intubated to going to the regular floor breathing on her own. Then recovering so well that she's home already, GOD is GOOD!!! We have a lot to be thankful for!
Please continue to pray for Trinity's recovery and that she can soon come off the pain meds. Our friend Will is also in the hospital after having hip surgery. Please pray for him and his mom, Rebecca. We enjoyed getting to spend some time with them in the hospital. The doctors and nurses called them Romeo and Juliet!

Sunday, October 2, 2011

Day #4

Hope everyone is enjoying their Sunday afternoon. It looks gorgeous outside here in Minnesota!
Trinity is doing pretty good. She's been on a few wagon rides yesterday and today and has enjoyed getting out of her room. She's been wearing her TLSO(abdominal brace) for an hour at a time to help keep her back straight so she don't do any slouching. She will need to wear this for the next 12 weeks while awake during the day. Her fever has come down, but still in the 100-101 range. They are not real concerned with it, but just continue to watch it. We had some vomiting this morning, but that has been the only time since the surgery which is good. They are keeping her feeds low at 25 ml's/hr which is less then an ounce. Hoping to increase it some more tonight.
The hope is that she will go home tomorrow, so we are keeping our fingers crossed for that. She looks great and we still can't believe how straight this has made her. Trinity is such a tough little girl!!
We can't thank you all enough for your continued prayers as Trinity recovers. We are blessed to have such wonderful family and friends!
**Also wanted to note that the pop tabs that all of you have been donating have been going to a great cause. This summer Ronald McDonald House opened in Gillette and is located inside the hospital. This has been great for our family during this stay. We are able to donate the tabs to help benefit this organization, so "thank you" for your continued support.

Friday, September 30, 2011

Before and After Surgery X-rays

Good morning to everyone! Just wanted to give a quick update this morning and share some X-rays so you can see the great improvement after Trinity's surgery. Once again her curve pre-op was 85 degrees and post-op 50 degrees. Trinity is doing well this morning with the exception of a small fever and being heavily medicated to control the pain. Thanks again for everyone's continued thoughts and prayers!

Thursday, September 29, 2011

Surgery and Recovery

As days end starts to draw near Miranda and I have a lot to be thankful for. So many thoughts, feelings, and emotions run through the both of us. Of all the feelings, thankfulness is the most prevalent feeling we have.

Last night Miranda and I had an experience that we haven't felt for awhile. We gathered at the Westwood church for an anointing service for Trinity. We were accompanied by lots of friends, family, and members of the church. This was led by pastor Joel and was an extremely overwhelming feeling of support and affirmation that where two or more gather God is there. Thanks be to God for friends and family!

The day started early at 5:30 am as we all were getting ready at the Arthur residence. Out the door on time and headed for the hospital I was soon reminded that dad does not do a lot of big city driving, and " follow close behind me " could be a challenge driving across Minneapolis. We arrived on time to the hospital and got checked in. Trinity was so amazingly strong through the pre-op I couldn't believe it. Trinity brought laughter to Miranda and I as she directed the nurse where her pulse oximeter was to go on her toe not her finger, and was quick to put the blood pressure cuff on her leg and not her arm. " I guess you know how you want things " the nurse replied. Dr. Walker came in and talked us through what was going to happen and as a laid out a general time line. A few highlights were, surgery 4 to 6 hours, 7 to ten day stay after surgery, and keeping Trin intibated for one to two days was probable. We were able to pray with both Dr. Walker and Koop before they took Trin back. God was busy at work this morning! Lastly, came the long walk down the long hall to the ever so dreaded departure of Trinity to the surgery room. Miranda and I were a bit of a mess while Trinity stayed strong not to shed one tear, once again I was amazed in her unbelievable strength.

To give everyone a little background on the particulars of the surgery, we were instructed that they would be placing either one or two titanium rods on one or both sides of her spine. Prior to surgery today Trinity had a 85 degree curve to her spine. When I try to put that in perspective for people I always ask them to picture a 90 degree angle and know the Trins angle is 85. If you look at this on an X-ray it is a bit puzzling. I have a included rough picture to give you a visual of what they are doing.

At around 11:30 Dr. Koop came out to greet us with a smile and provided us a huge feeling of affirmation. Everything went very very well! Wow, what a huge feeling of relief and answered prayers. He continued by telling us that Dr. Walker had the rod placed and was working on getting Trinity closed back up. At around 1:00 Dr. Walker came out to further inform us that everything went as good as it could have and was Trinity was a trooper. A total of 20 CC's of blood was lost throughout the surgery which is less than one ounce, and is hardly anything for this type of surgery. God continues to work!

In the post-op room we greeted Trinity and the nurse and were informed that due to her strong breathing after the surgery they were able to pull her breathing tube. They also informed us that because Trins vitals were so strong we were headed for a normal hospital room instead of the PICU which we were told. God continues to work!
As it sits right now Trinity is doing very well with the exception of a little fever which has been fairly normal with previous surgeries.

The last highlight of the day that I wanted to share happened this evening about 6:00 PM as doctor Walker walked by me as I sat in one of the waiting rooms down the hall from Trinity's room. I stopped Dr. Walker and asked him what was the most people he has had ever praying for him for a surgery. His response was, I'm not sure but I assume I have had some. He then asked how many I thought were praying for him and Trinity today. I said I would say a few hundred for sure. He then shared that he and his family attended church and he was a believer. He followed that by saying that he has had some surgeries that go very well and some that have gone not so well, but today's he said went unbelievably well. He then looked at me and smiled and shook my hand. God continues to work! Thanks to everyone for all or your thoughts and prayers, God has certainly answered them today!

Monday, September 19, 2011

Surgery and Updates

Next week the 29th, Trinity will have growing rods placed at Gillette. With it only being about a week away it is definitely causing some butterflies in the stomach. This was a big decision for Shannon and I, but God has given me a peace about it and we are putting our faith and trust in Him! They are looking at it being around 5-6 hours and she will probably be in the hospital a minimum of 7 days. Last week she had many prep-visits with her pulminologist, pediatrician @ Gillette, and neurosurgeon. They changed her feeding tube from a G-Tube to a GJ-Tube with a long extension so after surgery with her having to be on her stomach this will make it easier to feed her through her tube. They added 4 extra hour of feeds through her tube a day to help with her nutrition and also hoping that she would gain some weight. We also added some protein because the bloodwork they did showed that her levels were low and this will help with her healing. They also see in some x-rays that her bowels are very backed up so they are having us do water enemas that have not been a ton of fun. But hopefully all these changes are going to prepare her little body for this big surgery and she will heal quicker and get along a lot better after surgery.

Today Trinity got some new glasses and they make her look older and soooo cute!!! This is going to be a huge adjustment for her, but Trinity is the queen of adjusting. She also started school last week and loves it. She's in an integrated preschool class 3 days a week in the morning. She has some awesome teachers and nurses!! It has been so neat watching her interact with the other kids. She's not real crazy of gym time because of the noise, but luckily it is a big gym with lots of corners! She will be going until next Wednesday and then will be out of school around 3-4 weeks and then only going back part-time until she recovers from surgery.

The last few weeks have brought a lot of adjustments to the Arthur house. With Aubree starting kindergarten, Trinity starting preschool, many medical adjustments for Trinity, new glasses, and just the preparation of the upcoming surgery there has been a lot of stress and tears. God has blessed us with an amazing family and Shannon and I feel so blessed in so many ways! A few weeks ago we had the privilege of sharing in one of the most awesome experiences. Trinity and Trew were dedicated at Co-Line pond in Sully by Joel Schnell (Shannon's brother-in-law). The day could not have been more perfect! Since moving away from Iowa we have not felt led to join a church and since finding out about this surgery I had felt the need to get Trinity dedicated, but didn't really feel comfortable doing it without our family present. So with much prayer we asked Joel because he is someone that Shannon and I have a lot of respect for and look up to as a Godly man. We had all our family there to witness and to help in praying over our kids and family. It was AWESOME!! There are not enough words to express how amazing the day turned out and how the presence of God was all around us! (Aubree was dedicated in Iowa when she was a baby)

So as next week approaches I am going to work on replacing "fear" with "FAITH"!

Wednesday, August 10, 2011


We are having a great summer so far! We made our first trip to the beach a few weeks ago and the kids had a lot of fun! Trinity did great in the water and had so much fun army crawling on the beach. School will be here before we know it. I can't believe I will have a kindergartner and a preschooler! I am having a hard time with it. :(
A few weeks ago we were in Iowa and had an appointment with an orthopedic surgeon at the University of Iowa, Dr. Weinstein. We didn't learn anything knew regarding Trinity's scoliosis. He feels that there is no doubt that she needs the surgery and that it needs to be done soon. He said that he feels that we are in good care here and that there should be no reason a surgeon up here couldn't do the surgery. He don't feel it is necessary to do the surgery in Iowa, especially with all the follow up care that she will need and the risks is infection and her body rejecting the rods. He agrees that the brace is doing no good, but that she would definitely need to wear it for about 2 months after surgery to keep her back straight.
We are still really struggling with this surgery and the surgeons. We want the best for Trinity and making these decisions can be so hard on the both of us. The biggest hangup is Trinity's size and her age. This is not a common surgery for her age and her size. She don't have much fat on her body.
As for now surgery is scheduled for September 29th. The surgery can take anywhere between 5-6 hours, but if they have to go through the abdomen and the back it could take 9-10 hours. I don't even like to think about it. I have given this to the Lord and we are trusting in Him to guide and direct our decisions.
On Thursday we see her Urologist. This will be an interesting visit considering that Trinity has had numerous UTI's in the last 2 months. Hopefully they won't want to do anything sugically soon, but surgery has been brought up before.

Tuesday, June 28, 2011

Busy House!!

Wow! It has been a long time since our last post. I guess that means we are really busy with our new addition to the family. We were blessed on May 17th with our baby boy, Trew Duane Arthur. He weighed 7lbs 14oz and 19inches long. He's such a good baby and has been a huge blessing to our family! Most think that he looks like his dad, but I am hoping that might change so I could get one child that looks like me!! (not looking real promising) Trinity and Aubree love him so much and are big helpers! Trinity likes to steal his pacifier from him, but we are working on that :) Aubree is a little momma to all her siblings and this helps mom out a lot. We are very blessed to have such a wonderful family!!!

Last Monday we had an appointment with Trinity's Orthopedic Surgeons. Not great news unfortunately :( To better explain our appointment I am going to type right from the dictation of Dr. Walker.
"On examination today, Trinity was examined by Dr. Koop and myself. Inspection of her back reveals once again that she has a large left thoracolumbar prominence. She has a deep right waist crease. With traction under axilla and pressure over the lumbar spine, there is moderate flexibility and the curve can be improved. Examination of her hips reveals that she does have a mild hip flexion contracture of approximately 5 degrees on the right and 5 to 10 degrees on the left.
Her previous x-rays were reviewed including her sitting AP and lateral x-rays out of her braces on April 21, 2011, as well as the traction film. Out of the brace, her curve measures close to 85 degrees from approximately T8 to L4. Her traction film shows this improved to approximately 60 degrees.
At this time, it would be reasonable to proceed with surgery since bracing is no longer effective. If the curve is not addressed, it would likely get progressively worse and eventually lead to greater problems with regard to sitting, skin issues, and potential other longer-term issues, such as pulmonary or cardiac problems. In light of her young age and size, some form of surgery to preserve growth would be preferred. There would be options of possible single or dual growing rods versus VEPTR therapy. In specion of her skin and soft tissues show that she does not have a great deal of soft tissue coverage. Dr. Koop and I agree that some form of a "growing rod" type system would be our preferred choice. However, both types of implants have issues or concerns. First of all, there would be a potential risk such as infection, rod breakage, or loss of fixation to the spine either proximally or distally at the upper or lower parts of the spine. In addition, we would have the initial surgery and most likely be able to put in a single growing rod. This may mean that she would need to have continued use of a brace. Eventually, she would potentially have a second growing rod placed if she had adequate soft tissue coverage and size. Furthermore, the goal would be to preserve her growth. She would need to have a subsequent scheduled lengthening every six months to lengthen the implants. However, if an unscheduled problem or complication arose, such as infection, loss of fixation, or a broken implant, then she might need to have an unscheduled or unplanned procedure. Ideally, we would try to preserve her growth for at least the next three to five years. If we can preserve growth until she is age 8 or older, then she would potentially require a definitive fusion of her spine at that time. If we encountered overwhelming complications, then we many need to abandon the implants and remove them."
So there it is the plan going forward for Trinity. However, I will be back this month while Shannon is in Alaska and have scheduled an appointment with a doctor in Iowa City. We feel like something this complicated needs to have a second opinion. If anything to give us peace of mind. The surgery is scheduled for September 29th. We wanted to get it on the books since both surgeons have conflicting schedules.
This is a huge decision for our family. We would greatly appreciate your prayers as we get the second opinion, but also pray for the doctors and that they would have confidence in this surgery and that God would guide them moving forward.

Wednesday, April 20, 2011

Growing Rods vs. VEPTR

Trinity had her checkup last Monday with her Orthopedic Surgeon. They did some x-rays in her new brace and found that it is not helping with her scoliosis and that they feel like her spine is getting stiff and unable to be flexible. On Wednesday they had a conference with all the Spine doctors at Gillette and are requesting that they do some more x-rays and some traction x-rays. Some of these will help them determine how flexible her spine is. As of right now the plan is to do growing rods or a VEPTR in July or August. They are being considerate of the new baby coming, but also letting us know that it can't wait much longer. Her curve is about 70-80 degrees and for as young as she is and petite, this is not a real common surgery for someone like Trinity. Shannon and I could really use everyone's prayers!!! This is very hard for us to digest and to know what is right for Trinity. This would be something permanent in her body until she is old enough to do a spinal fusion. With how small she is it is hard for us to wrap our heads around her having these rods in her body and what does that mean for her; pain, breaking of her bones, etc... I have been doing a lot of research online, but nothing seems to be helping us determine what is right for her. She needs something done because this can't go much further, but it is hard to think of surgery again. If you know of someone that has a child as young as Trinity with growing rods or the VEPTR please put them in contact with me. I would love to talk to someone that has been down this road and to know what life looks like for them after the surgery.

We will be sure to let you know how the x-rays go and if there is any other decisions that the doctors make regarding her scoliosis.
Thanks for the prayers!

Tuesday, April 5, 2011

Many Updates!

Happy Spring!! I wish I meant that, but unfortunately it is still cold here and we still have some snow on the ground, but hopefully the fun, warm weather is just around the corner.

Lots of new things have been going on with Trinity. She had her teeth cleaned for the first time and it went great. They had to put her under for the procedure because of her vomiting, but her teeth came out looking nice and clean with no cavities or rotted teeth. This was a huge relief, we really thought her teeth were bad because of all the vomiting she does and we can never get a toothbrush in her mouth long enough to be effective.

On St. Patricks day Trinity got her new TLSO (brace). It is really uncomfortable for her, but because her scoliosis is getting so bad we have to do something to prolong any surgeries. She has done really well tolerating it.

They have also switched Trinity's formula to EleCare. This is a hypoallergenic medical food to help with the food allergy they think she has to the Pediasure. Unfortunately she will not take this through the bottle orally so without the bottle she really don't get anything orally. This has been really discouraging coming on a year of her having the G-Tube in July, we really thought we would have made some progress by now with her eating, but instead we have gone downhill. This is something we could really use some prayers on!

We had the pleasure of spending last week in Iowa with our family. It was really nice to be with them and nice to have Shannon there with us for the whole week. The weather was pretty good and the girls always love being with their grandparents! Now we are preparing for the baby to arrive in May. Hard to believe it is getting that close!

Monday, February 21, 2011

Happy "3rd" Birthday Trinity!!

Wow, has it really been three years since God blessed us with the most amazing miracle? We have thought back a lot lately to what all has happened in the last three years with Trinity and it feels like a roller coaster ride! We are so blessed to have such an amazing little girl that through everything she has encountered shows so much strength and determination. We are so lucky that God chose us to be her parents!
Thanks for all the prayers through the last three years. Although things continue to go on in Trinity's life and prayers are still very needed, we feel very blessed to have our family and friends always supporting us in prayer!

Saturday, February 12, 2011

Crazy Busy!!

It seems like 2011 has already been crazy busy for us! Trinity has had a few appointments lately. She had a Urology appointment last week that showed some spots on her bladder. They went ahead and started treating her for a UTI, which was confirmed on Monday that she had. On Wednesday she had a Brohnoscopy, Cystoscopy, and a Endoscopy. We are waiting for some biopsies to get back on the Edoscopy and the Brohnoscopy, hopefully we will know something on Tuesday or Wednesday. It did show that her esophagus is very irritated and that could be a cause of a number of things. They promised us that we would not walk away from this without some answers, so I hope that is the truth! The Cystoscopy showed that Trinity's bladder and her sphincter are working against eachother and making it so she don't empty all the way. They would like us to start doing catheters 4x's a day. This was a big disappointment, just because we have always looked at this as being the one thing that was going good for Trinity, but I guess it was bound to happen. They are also going to work on some different ways we can get Trinity to get oxygen at night, since we still have not had any success of her wearing the mask. They want to start machine at night also to see how low her oxygen is going, especially when she is sick with a cold. We are really blessed so far this winter that Trinity has only been sick twice, which is a huge improvement from last year, so we really feel like what we are doing is working for her.

On Thursday we had an appointment with the Dentist at Gillette. Trinity freaked out and cried the whole time, but the little time that he did get in her mouth he didn't see any cavities or rotting teeth, which is great news! In June they are going to put her under and go in and do x-rays, scrape off the decay, and clean her teeth. He said that the brown spots on her teeth will come back because of her diet and vomiting, but they will try and clean them at least once a year. Her mouth is also overcrowded which is pretty common with Spina Bifida kids, so down the road she will have to have some teeth pulled to make some room in her mouth.

I have been feeling pretty good and we have been busy trying to decide on some names and what we are going to do with our room situation. Aubree thinks she is a big girl now and can go downstairs, mom is the one that struggles with it! Aubree has been doing really good in school and Trinity is really excited to start school in the fall.

It is nice to see the sunshine today and finally be up in the 30's. I can handle the snow, but this below 0 temps is getting really old!

We hope everyone has a great Valentine's Day!!!

Saturday, January 15, 2011

It's A Boy!!

On Monday we had our 20 week ultrasound. Because of Trinity's condition we had to have a level 2 ultrasound so they could make sure everything was good with this baby. I will admit it was a little nerve racking going in and waiting to hear good or bad news. The great thing is that the baby looks great and they don't see any signs that there are any problems. It is so amazing the things they can see on those ultrasounds, but I am so thankful for them! We also found out some exciting news, we are having a BOY!!! The girls are really excited and daddy is pretty excited too! My due date is still May 28th, but I will be having a c-section so he will probably come a little sooner then that. It was very refreshing to walk out of the clinic and feel relief for a healthy baby!

Trinity has also had a lot going on. She got her wheelchair and it is going very well for her. They have a few adjustments to make to it and we have to get a tray made, but other then that she's very happy with it!

On Dec. 23rd we seen a Pulmanologist @ Gillette. This was a great appointment and we felt like we are going to start getting some answers. The doctor spent over an hour with Trinity and discussed a lot of what happens on a daily basis for Trinity. He put her on Pulmicort twice a day through her nebulizer and also ordered a breathing machine for her that she is to do at naptime and bedtime. Unfortunately we have yet to get her to wear it, but everything is a work in progress. This should help with her sleep apnea and help open her lungs up and get some fresh air, in hopes it would decrease her pneumonia's. We are waiting to hear back from the hospital to get her in for a a couple night stay to do some testing on her stomach and lungs. With this stay they may look at doing a G-J tube. This would change her tube from going to her stomach and then to her small intestine and instead her tube would go straight to her intestine. This should help with some of the issues Trinity is having with vomiting. Shannon and I are a little leery of this because of how active Trinity is (in her chair, army crawling on the floor, etc...) and she would have to be hooked up to her feedings more throughout the day instead of just getting her overnight feeds. But whatever is the best for Trinity we want for her. I pray for the day that she can eat regular food and enjoy the tastes of things.

We enjoyed two weeks in Iowa with our families, but are glad to be home and get back into our daily routines. Trinity has her evaluation through the school on Tuesday and we will discuss what we will do for school come fall. She has made so much progress on her speech, but unless you spend a lot of time with her it can be difficult to understand. We are looking at an Ipad for her with a speech program, but we want to make sure it is the best thing for her first and that it will meet her needs to communicate with others.