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 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.

Day #4

Trinity has had a pretty good day today. At 5:00pm Trinity got to slowly sit up for the first time in 72 hrs. She started out in bed at different levels and then made her way to mommy's lap. It felt like holding her for the first time, really exciting. So far she's showing no signs of any leakage and doing great. She is taking a break right now in bed, but still a pretty happy girl. Last night Shannon and I got to see the incision and it looks great. Dr. Partington did a fantastic job and we are amazed at how clean and good it looks. We are crossing our fingers, but hopefully tomorrow she will get to go home! As long as there is no leakage and things are going good for her we should get to go home.

One final note: GO VIKINGS!!!!!!

Day #3

Trinity is doing pretty good. Today has been so much better then yesterday. Her headaches have pretty much gone away (we are guessing by the way that she has been acting today) and the pain seems to be getting better. We have had a few issues with some vomiting last night and today. They think it is due to the pain meds that she was on, so we are going to just try Tylenol for now. She's starting to get an appetite back, but it is taking some time. Dr. Walker (Orthopedic Surgeon) came in today to see Trinity. He feels pretty optimistic that if we get Trinity back into a brace after she heals it could help correct her scoliosis. He wants to see her on Monday if we are still in the hospital otherwise we will get an appointment made to see him soon. I pray that it will work so we can avoid surgery again for awhile. We also got to talk to a Dietitian today and found out that Gillette has a feeding clinic (Occupational Therapist, Speech Therapist, and a Dietitian) they will help us with Trinity's eating and her speech. This will be something we will look at doing after the first of the year.

Tomorrow Trinity gets to finally sit up for the first time in 3 days, we are all looking really forward to this! I wish I had a video camera here to show you just how strong Trinity is and how bad she wants out of her bed. She has been grabbing the bars of the side of the bed and pulling her self around the inside of the bed (from side to side). She's so ready to be able to sit up and do things other then just lay flat on her back. Not real sure when she will get to go home, but we are hoping for Sunday?!?!

Trinity got a Christmas Tree in her room today. It is about 1.5 feet tall and is decorated with playdough, cutouts, and some other toys. It has lights on it and decorations. A couple that had a child in the hospital over Christmas donates 35 trees to Gillette for kids that spend time in the hospital during the holiday season. We have it on the end of her crib and have the lights on. I will make sure to post a picture of her with her tree. Just one of the many things that this hospital and volunteers have given to Trintiy. So far she has gotten a tie blanket, baby pillow, and a tag blanket (because she got sick all over her other blankie). The nurses and staff are amazing here. Aubree got to do a craft last night with some other children that are in the hospital. She had a lot of fun doing it. We are very happy with our decision to switch to this hospital!!

Hopefully our next post will say "We are Home"!
Love~Trinity and family

Post-Operation

Sorry for no update yesterday, but it was a long day and I didn't get to a computer until now. Things are going pretty good. Trinity got out of surgery around 5:00pm yesterday. The surgery went good with no complications. Trinity has to lay flat on her back for 72 hours. Last night this wasn't so bad because of all the pain meds she was on, but today has been a different story. She really wants to get up and especially be held, really hard for those of us that want to just pick her up. She had a long night of pain and many visits by the nurses. Sleep is always minimal in the hospital, but hopefully we can get some better sleep tonight. Dr. Partington checked in on her this morning and checked on her back. It is looking good with minimal drainage (the main reason for keeping her flat). He did say that she probably is having spinal headaches because of the way that she was positioned during surgery and also when you open and close the spine the spinal fluid gets confused as to where it is suppose to go. Because of the headaches she pulls at her hair, covers her eyes, and tosses her head in pain. Not fun to watch your helpless baby girl and not be able to help her.
Trinity was pretty excited to see her big sister today. Aubree and Nana brought her a big balloon and a stuffed snowman. Trinity also got a visit from a golden retriever named Trooper. He put his paws up to the bed and Trinity went nuts, she wanted to get out of the bed so bad and pet him.
I can honestly say that this is one of the BEST hospitals with wonderful staff. It is very comforting to know what great care your child is getting and to also know that there are so many kids with the same thing as Trinity rolling around the halls in their wheelchairs and walkers.
Trinity could use your prayers tonight and the days to come as it is going to get harder for her to want to lay flat. Also prayers that her headache and pain would diminish would also be appreciated.
Love~Trinity and family

Surgery

We are currently at the hospital waiting to be admitted for surgery. We had to be here this morning @ 8:30 so Trinity could have a CMG and a ultrasound of her bladder before surgery. The CMG went good, but we won't know anything for sure until the urologist reviews it. The surgery is scheduled to start @ 11:45 and it is suppose to be about 3hrs long. Please keep her in your prayers and all the doctors and nurses. Aubree is staying with our friends, Amanda and Stephan today so I am sure she is enjoying herself! We will probably update later this afternoon when Trinity gets settled into her room.

Untether

I should have updated about a week ago, but I wanted to wait to hear for sure what the date is going to be for Trinity's surgery. On December 9th Trinity is going to go to Gillette and have her spine untethered. This is about a 2-3hr surgery where they will go in and remove the spine from the skin and he will also do a shunt tap to confirm function of the shunt.

There was an MRI done on Oct. 29th. They looked at her Chiari, spinal cord, and repair region. We talked about Trinity's vomiting of which has not improved. Dr. Partington feels that it is most likely related to the Chiari, and that it generally does not respond to surgery. Basically this is going to be a part of her life and hopefully as she grows she will grow out of it. Our main concern is her weight and that she as been at 16lbs since January of this year. So we are praying that we start to see some weight gain, soon! On the MRI the Chiari decompression area looks good, with visible spinal fluid around the brain stem. They see the tethering at the repair site of which was no surprise. Because of the progressive scoliosis he would like to get her untethered soon.

Trinity will go in on Dec. 9th and the minimum stay is 3.5 days and before she can leave she needs to be able to sit in her chair comfortably. While she is in the hospital she will also see the Orthopedic Surgeon. He will determine where we go from there on her scoliosis.

Trinity has had a cold now for almost a month. It just seems to come and go and we can not get rid of it. Hopefully we can keep her healthy around the time of the surgery. I hate the thought of her being in a hospital this time of year with all the different illnesses going around, but we really don't have much of an option. I know that God is on our side and he will be her protective shield.

One more note for all of you that spend time with Trinity. Sometimes you will see that when a loud noise is made Trinity will either cry or cover her ears and face. This is because of her Chiari. The doctor put it in these words, Trinity basically has a 24/7 hangover. Loud noises hurt her ears and loud sounds are really muffled and make a ringing in her ears. So if you are ever around her please remember how she feels when there are loud noises. I can't imagine how that must feel for her.

We always appreciate your prayers. Trinity is such a beautiful, rare gem! She makes my heart melt and has shown me so much strength. She has a huge heart with a will to do "great" things. When you watch her during therapy you can see the determination that she has and you know that she is going to go really far in and achieve many things.

Update

Just wanted to make sure that you are praying for Miss Trinity. We have an MRI on Wednesday. Currently Trinity has a cold and if it gets any worse they will not do the MRI, so please pray that she would get better and that this would not settle into her lungs. It took us almost 2 months to get this MRI so I really don't want her to not be able to have it.

We also seen Trinity's Pediatrician today. She has not gained any weight yet after being on Pediasure for almost 3 weeks. They also put her on Prevacid just to see if it would help with the vomiting and it has not helped. Hopefully the more she drinks of the Pediasure we will start to see higher numbers on the scale. He also had some blood work done and a urine test. I have noticed a fowl smell in her urine and was concerned that she might have a UTI, but it came back normal. He also wrote a prescription in hopes that when Trinity goes to Gillette on Wednesday they will have the H1N1 vaccine and be able to give it to her, so please cross your fingers for that!

Shannon and I wanted to give a BIG "THANK YOU" to those of you that save your tabs. The next time I drop off the tabs I am going to take a picture of all of them. I can't believe the number of tabs we get from all of you. It is truly amazing and I know that every child it helps put in a wheelchair appreciates it also. Thank you sooooo very much!

Many New Updates!

Life is getting busy around the Arthur household. Aubree started preschool two weeks ago and LOVES it and Trinity is back in therapy twice a week. Things are starting to get busy, but it is a good busy. There is a lot to update on so please bare with me as this is going to be a long post.

Eyes:A couple weeks ago we seen Trinity's eye doctor Dr. P. Trinity's eyes have not gotten any better and she feels that it is necessary to do a strabismus surgery. Basically they will go in and straighten out the eye muscles. Shannon and I are waiting to schedule this based on some other things that are going on with Trinity right now. Dr. P said it is a simple surgery that would be out patient (a good thing).

New Neurosurgeon: A little over a week ago we finally got in to see Dr. Partington (Neurosurgeon at Gillette Children's). You might remember his name because we seen him at Shriners a couple times. He wanted to have a CT scan done and then also an shunt series x-ray. Both of these looked good and her ventricles are small. The problem with finding out if the shunt is working 100% is that CT scans and x-rays are not always accurate and the only way to be 100% is for them to tap the shunt (surgery) and make sure. Dr. Partington really wants to rule out the shunt first because it could be causing the increase in scoliosis, vomiting, and the crossing of the eyes. I am a little sceptical of this, just because she just had a revision done in April and nothing has changed since then. Now if he goes in and sees that the shunt is working fine then he will probably go to her spine and un-tether it (separate it from the skin).

Before any of this happens there will be an MRI done of her entire spine. This is currently scheduled for October 21st. I wish it was sooner, but from the sounds of it it is hard to get into anything in this hospital early. For now he has turned down the shunt from a 1.0 to a .5 to see if it will impact the vomiting or the curve. Unfortunately I have not seen any improvement in the vomiting. So basically from now until October 21st we are in a waiting period.

Feelings: I would like to express my feelings on this post, because I want everyone to understand how hard this is for a parent. Trinity has been at the same weight for 10mths. We struggle daily with her vomiting, gagging on foods, and sometimes just refusing to eat. I have waited already 2 months for an answer on her scoliosis and the tethered spine to only get a response of waiting another month. I don't know if you watched Grey's Anatomy on Thursday night, but the mother that was on there with her son fits how I am feeling pretty well. I am frustrated and sick of getting the runaround from doctors. THIS IS OUR DAUGHTER, HER LIFE, and OUR FAMILY. I feel out of control and helpless. Shannon and I want the absolute best for Trinity and that is why we chose Gillette. We feel that she can get the best care there. Dr. Stealey(Trinity's Pediatrician) has been great! I just wish all doctors were more like him.

The therapist continue to find equipment to meet the needs of Trinity. Today her PT brought some shorts that she can wear when we are working with her. They help keep her legs stay together and help keep the hips in place. She wore them for awhile today and she did a great job. She really is a strong little girl with a lot of determination!!

I know there is a lot that I am missing on this post, but sometimes my head starts to hurt just thinking about everything. We appreciate all of your support and that you take the time to check in on Trinity!

Pictures!!

We got an appointment scheduled for September 3rd to see a GI doctor in St. Paul and I am still waiting to hear back from Neurosurgery to see what the plans are for Trinity and her scoliosis.

I really wanted to share pictures with you that I took over the summer. I hope you enjoy!!


Trinity at the State Fair, she loved the cows!!

My Dad and Trinity standing in front of the case with the Shriners hats.

This was Trinity's first time swimming in the water!!

She was loving it!!

Update

Well there hasn't been a lot to update about since we STILL haven't heard anything from the doctors. It has been 4 weeks and still no news. I am starting to get frustrated and wondering what the delay is.

On Monday we seen Trinity's new Pediatrician, Dr. Stealey. It was GREAT!! I felt so energized when I left there and felt so confident that someone was finally going to look out for the best interest of Trinity! He didn't get a chance to review all of her records, but on Tuesday and Wednesday he did and gave Shannon a call yesterday. He has talked to one of the BEST Ortho Pediatric Surgeons in the Metro and he said that he would be willing to see Trinity and look at her case. He is with Gillette Children's Hospital, of which we are switching all of Trinity's care to. We think Dr. Haines is a great Neurosurgeon, but we feel like Gillette is the best place for Trinity to get the BEST care. We have had so many people talk to us about how great it is there and you won't find a better hospital that can meet the needs of Trinity. I am really excited about this and pray that the transition goes smoothly.

Trinity is still not gaining much weight so Dr. Stealey is working on that and going to talk with other doctors to see what the next step should be. He also talked to Trinity's Urologist, of which he stated is also one of the best in the Metro area! We are currently doing more Mira Lax a day to help increase Trinity's bowel movements. So far it is working great, but she is getting horrible diaper rash :(

I wish I had more to report, but I pray that by Monday we hear something and know the next steps that are going to be taken with Trinity. We will be sure to keep you all posted.

Shriners & Swallow Study

On Friday Trinity had an appointment at Shriners in the morning. We were scheduled to have an x-ray and then she was going to be seen by the Orthopedic Surgeon and the Neurologist, things kinda changed after the O.S. seen her x-ray. If you remember back to April Trinity's x-ray showed that her scoliosis had gone from a 38 degree curve to a 45 degree curve. Well this visit it has gone to a 50 degree curve. For a child that is 17 months old this is not a good thing to see, especially since her curve has gotten 12 degrees worse since January. We tried the TLSO, but because of her vomiting she don't get to wear it very often. So the O.S. called the Chief of Staff @ Shriners which is also the Spine Dr. He took a look at Trinity's x-rays and evaluated her. He told me that if I had called him over the phone and told him that Trinity had a 50 degree curve, he said he would have told me it is time for growing rods. But because he now knows Trinity's situation they are looking at MRI's that she has had done to see what her spine looks like and to see if she has a severe tethered spine (where the spine connects to the skin). This could cause her scoliosis to get worse in such a short time. If there is a severe tethered spine then they will have to go in and separate the skin from the spine. After that is done we need to get her vomiting under control and get her brace back on her, but inevitably Trinity will have growing rods and a lot sooner then later. This was very difficult news for us. A growing rod has to be adjusted twice a year and they have them until they are through their growing years. After that they go in and try to straighten the spine. This is overwhelming for all of us. We have a lot of decisions to make and need to start thinking of Trinity's care and the doctors that she sees. I got to meet another Neurosurgeon @ Shriners that I felt very comfortable with and he is located at Gillette Hospital. We pretty much found out that we are at the wrong hospital (U of M, Fairview) and need to be thinking about switching to Gillette. Not because the U of M is bad, but Gillette specializes in Spina Bifida, so they deal with Trinity's situation on a daily basis. Many doctors came in and seen Trinity trying to figure out what is going on, but we are kinda at a stand still until they see and discuss the MRI with Dr. Haines. The PT/OT got to see her in her new wheels and they were very impressed with that. We discussed a wheelchair, but it is something that they want to wait on until she is 2 1/2 or 3. Shannon and I were trying to push it since we have already met our out of pocket for the year, but according to Shriners if our insurance don't pay for all of it or none at all the Women's Auxiliary club will (why we do that can tabs!). This was great news!

In the afternoon she had her swallow study done at the U of M. They have her drink some chalky stuff and watch her swallow it through an x-ray (very neat to watch this). They also fed her some stuff that was somewhat thick and see how she swallowed that. She did a great job and they don't feel like she has any difficulty swallowing. She has an immature mouth for her age (about a 6 month old) so we need to work on this and train her mouth with different foods. So we are still not sure why she is vomiting, but we are going to make an appointment with a GI doctor at the U of M. We will let you know when we have that appointment and how it goes.

I know this is a long post and I hope you understand it too. There is so much to tell you about Friday, but I honestly have such a hard time typing all of it. Friday was a very long and emotional day for all of us. I am constantly trying to figure out the "Why's" and I never get any answers. The doctor told me that things are going to get better for Trinity, sometimes it just takes awhile to get through all the road blocks. I appreciate his confidence, but it still don't help the emotions I feel for our little girl and all the things that she has had to go through lately and the things she will face in the future. We need prayer and lots of it. We have a lot of decisions to make and we don't want our emotions to get in the way of making the right ones. We only want what is best for our little girl.

Trinity's Caster Cart

Trinity wheeling herself around on the caster cart

Trinity is all smiles when she gets to have the freedom to go where she wants and get the things she wants!

This is the first day in the caster cart!

Last week Trinity was introduced to her Caster Cart. Trinity's therapist really didn't expect much out of Trinity when he put her in it, but within minutes she started pushing the wheels and moving herself around. The caster cart is used to teach children how to use wheelchairs. I have not seen her this happy in a long time. She smiles when she moves and she is moving to get things that she wants. It is such an awesome thing to watch. It is like watching a child take their first steps! It was a bittersweet moment for Shannon and I, it makes you sob when you see her do it. I can't wait for the things to come for Trinity and the freedom that she is going to feel.

On Friday Trinity has a visit at Shriners. She will see the Orthopedic Surgeon and they are going to do some x-rays to look at how her scoliosis is doing. We head to the UofM in the afternoon for her swallow study. Please pray for Trinity and the doctors so we can figure out what is going on and get her to start gaining some weight.

No Title :(

Sorry, I get sick of trying to come up with a title so I decided to name this one "No Title", seems appropriate.

There really is not a lot to report. We are still having a lot of issues with Trinity vomiting. Last week on Tuesday, Trinity and I spent the afternoon in the ER. Trinity was having some vomiting and was very lethargic. They did a CAT scan, blood work, and a urine sample. Everything came back good and she did not show any signs of a UTI. Her shunt also looked good, so we left there with still no answers as to why she continues to vomit. This week we finally got the Pediatrician to get a swallow study scheduled with the UofM. Unfortunately they can not get her in until the 24th. To Shannon and I this is a long time to wait, considering the amount that Trinity vomits in a weeks time. It breaks our hearts to have to watch her go through this and not be able to do a thing for her. We feel so helpless and wish we had answers. But she is such a trooper and always has a smile at the end of it all!

On the 24th Trinity will also be seen at Shriners and they will look at her Scoliosis again with an x-ray. Trinity has not been able to wear her TLSO for almost a month now. This has been frustrating, but the right thing to do since it does not help with the vomiting and only makes it worse for her. So hopefully on the 24th we will get some answers and hopefully her Scoliosis has not gotten any worse.

Trinity really enjoys being outside with her big sister! As long as the temperature is not to hot and there is somewhat of a breeze. She's doing amazing in physical therapy and is trying so hard during her sessions even though you can tell she don't want to do it. With the support of her arms Trinity is sitting on her own for almost 2-3 minutes. This is progress!

I am sorry for the delays in posting sometimes, but things are getting busier for us the older Trinity gets. I would like to try to update you at least every week, but sometimes that is not possible. Please know that we still appreciate your prayers as Trinity continues to grow and prayers that we would find out the cause for her vomiting.

We hope you all have a fantastic weekend!

MRI

Trinity is doing pretty good. She had an MRI on Wednesday to look at her Chiari and Shunt. Everything looks pretty good. She has a lot of scar tissue, but there is really nothing they can do about that. We also had to discuss the problem with getting an IV started in Trinity. Everytime she has to have an IV they have a terrible time getting one in and for the MRI she had to be sedated so they had to do an IV, well after the 4th poke and getting the manager to do it they finally got it. I discussed this problem with some of the nurses and the anesthesiologist and they wanted me to discuss this with the Neurosurgeon and talk about some options. There really are only two other options and the one will not work for Trinity because of her low muscle use in her rectum, so the other option is a port. Dr. Haines said that it will probably be an option if she has to have another surgery. So we are praying that things will change for Trinity and they won't have such a difficult time, but they told us that the older she gets the harder it will probably be. Her shunt is working like it should, and I love the new valve, because it is so much easier for them to reprogram after an MRI.

We are going to make contact with her pediatrician this week and get a swallow study done soon. Trinity is still not gaining weight and Dr. Haines even mentioned this at her last appointment. We also have a call into the Orthopedic Surgeon because of her brace. Trinity is suppose to be wearing it at all times except when she eats and sleeps, well for those of you that know Trinity she sleeps at least 4hrs during they day and about 13hrs at night, so that leaves her about 7 hrs, but because she can't wear it while she eats that takes away another 3hrs because we have to give her time to get the food digested and settled into her stomach. Well when you really add it up she is only getting at the most 4hrs in the brace, if that. We have also been having issues with her vomiting while having it on. So we are trying to figure out something that will work for Trintiy. It has been a week now without wearing it and that makes Shannon and I nervous, the last thing we want is for Trinity to have surgery earlier then we wanted to help correct the scoliosis. Hopefully they will get something figured out soon so we can get her back into it.

She hasn't had much PT lately because of the summer hours, but I try to fit them in a couple times a week and any activity for Trinity is PT.

The girls and I get to head back to Iowa on Monday and are really looking forward to spending a week with some family and friends. Shannon will be coming on Friday and then riding in the Poker Run for Stella Turnbull. If you remember last year Co-Line had a Poker Run for Trinity and this year it is for our "great" friends daughter Stella. All the proceeds will go to help her get wheelchair/van. If you live in the Lynnville area or surrounding communities please come join in raising money for such a special little girl! Here is her website with all the details http://www.caringbridge.org/visit/stellaturnbullturnbull

Have a great weekend!

Pneumonia and PT

Last week we made an unexpected ER visit with Trinity. She had a really nasty cough for over a week and I took her to the doctor to find that she had viral pneumonia, they wanted her to go on to the ER to make sure that a good x-ray was done and to look her over really good. They did determine that it was viral pneumonia and they sent us home with a nebulizer to give her treatments every 4hrs. In the last 2 days she has finally been getting over her cold and starting to act more like Trinity. Now Aubree is sick, I swear we don't get many breaks around here!

It has been a good week for Trinity. We had PT on Thursday and she did great!! We sat her in a sitting position and while leaning on her right arm she sat all by herself for 1 minute and 15 seconds, this is a record!! She also layed on her belly and pushed herself up on her arms with no help from anyone. This made my day and pretty much my week. The physical therapist was very impressed with how well she did, especially after having pneumonia. She's getting such a personality and it is so much fun to watch. A big hurdle we are trying to get over is the eating problem. She still can't eat any table foods without vomiting, so I am waiting to hear back from Shriners to see if they will do the swallow study or if our pediatrician should order it. We need to get something figured out so the girl can start eating some fun foods and gain some weight! I looked at Aubree's medical records from when she was born and I compared them with Trinity's I got quite a laugh out of it. When Aubree was 15 months old (like Trinity is now) she weighed 28lbs, Trinity only weighs 17lbs, how funny is that! So you can see now why Trinity can not fit into most of Aubree's clothes that she wore when she was 15mths old! I love it though, Aubree and Trinity are so different in so many ways and I love that God chose Shannon and I to be there earthly parents. They both bring so much joy to our lives!

We are having a rainy day here, but it is desperately needed. I have a great neighbor that I and the girls have grown to love! They have 3 girls all under the age of 4 and Aubree loves playing with them. We are going to take them to a indoor playground and let them get rid of some energy today. :-)

Hope you all have a fantastic week!

Many New Updates!!

I want to apologize for not updating about 2 weeks ago, but it seems like things have been busy here and the blog seems to take last place.

Trinity is doing really good. She got her brace 2 weeks ago at Shriners and she has been doing pretty good with it. She definitely has her times when she gets upset and irritated with it, but we have been trying to give her breaks throughout the day so she don't end up hating it. She has to wear it on the outside of her clothes or we have to put a onezie on under it, to make sure to protect her skin. Before the TLSO Trinity got hot real easy and now with this it is about 10 times worse. But we will figure something out for the summer to help keep her cool.

She has also been seen by the eye doctor recently. Trinity had many different tests done to her eyes and they basically came up with that she has issues with being cross eyed. This is probably due to the pressure that was put on her brain causing the muscles of the eyes to have pressure put on them. So for the next 4 months we are going to do eye patches everyday, for 2 hours, alternating eyes. She really don't seem to mind this and we usually do it during her most awake times. She will be seen again in September where they will decide on whether or not to correct the crossing by going in and straightening out the muscles of the eye. She don't show a need for glasses right now, but that is something will check on after the crossing has been fixed. We really have to focus on the eye problem, because when kids are cross eyed they will begin to choose one eye over the other, and then stop using that eye at all, which can make the eye go blind. So we really don't want that.

We were suppose to have an MRI done yesterday, but because Trinity has a really bad cold they felt it would be too risky to put her under for that long, so we had to reschedule. I was really looking forward to this MRI so we could see how the brainstem was looking and to look at the spinal cord and see if there was any tethering. But I guess we will have to wait until the 17th.

We really enjoyed our month of May. We got to go back to Iowa for Mother's Day and some graduation parties. This last week Shannon took the girls back to Iowa for a little vacation and I went to Laguna Beach, California with two of my girlfriends, Amanda and Caprice. We had a great time and it was so relaxing!!

There are many prayers needed all around. At night Shannon and I pray with the girls and it seems like we are always adding someone new to our prayer list. Please add the following people to your prayers: LeAnn Hasley, Arvin DeCook, Mike Lind, Trinity (her nasty cold), all the kids that are sick with an illness inside the hospitals, and my friend Amanda's sister-in-law Heather. I am sure there are more, so if you need prayer or no of someone that does, please comment on this post I will be sure to add them. That is what I love about this blog, everytime I put a need on here I know someone is going to help in praying for it! Thanks to all of you that take them time to pray for those in need.

Have a great week and I promise I will start updating more!!
**I will also be posting some new pics of Trinity real soon!!

Scoliosis & TLSO

Last Tuesday we went to Shriners to have Trinity seen by the Orthopedic Surgeon. Before he seen her he had an x-ray taken to look at Trinity's hips and her scoliosis. He found that her scoliosis had gone from a 38 degree curvature to 46 degrees. With that being said he felt that it was necessary to put Trinity in a TLSO (abdominal brace) to prevent the curvature from getting any worse. She will wear the brace everyday except when she eats and sleeps. The brace will have to be worn until she is old enough to do surgery and put rods in to help straighten out the curvature. The surgery would probably be done sometime in her early teens, unless the curvature gets worse and then they would look at doing something else which would involve a surgery every 6 months. So we are hoping that this works and keeps it from getting any worse. She will get her brace next Wednesday at Shriners. I took some pictures of them forming her for the brace. I will try to put them on later this week or next week when I post some with her new brace.

This will be a hard transition for Trinity and the family. I look at what all she has gone through so far and I know that this will probably be minor in HER eyes! I am so grateful that the brace will be of no cost to us because we are having it done at Shriners. It takes such a burden off of our shoulders when we know that we don't have to worry about the expense of the brace, especially since she will need one everytime she grows out of the old one.

Trinity's PT also brought over a new high chair that will work with her chair from Shriners. This way she can sit at the table with us while we eat and she can play at the table. She really enjoys this!

PRAISE: Trinity has not vomited in over a week!!! We are praying that the problem has been fixed or maybe God (the GREAT physician) performed a miracle!

????

I didn't know what to put in the title so I just put ? marks. Well I am sure you already know, but we did come home and are very happy to be here! Trinity has had a pretty good week other then she vomited Wednesday night and Thursday morning. She also had diarrhea this week too, but never ran a fever so I wasn't overly concerned. We kinda don't know what to think at this point, did the shunt revision work?... or did it not? Dr. Haines would like to wait about 3 weeks before we proceed with anything else. At that time they will do a shunt series x-ray and an MRI of the head and spine. Then after we do this we will go from there and see if we need to start looking at her upper and lower GI. I also need to make an eye appointment this week to have her eyes checked. I am going to stop right here and just explode for a minute or maybe an hour!!

When your child goes through 8 surgeries, many days in the hospital, many doctor appointments, many needle pokes, physical therapy twice a week, did I say many doctor appointments, can't eat like a child at her age should, has lost weight and can't gain any back, you start to wonder "WHEN" do things start to look UP for Trinity? It is frustrating!!! I don't complain to much on this blog, but I have discovered that this blog is what helps me get through all of this along with the strength and grace of God! So if you don't want to hear me complain then I suggest you don't read my blog.

I remember the day when Aubree was a baby and would get her vaccine shots. I remember thinking how horrible it was and how I couldn't wait for the day that she didn't have to have those horrible things done every couple months. Now I have a 14 month old, STRONG child that has been poked more then I can count, along with all the other things I listed above. As we left the hospital this week one of the nurses made a comment "hopefully this is your last visit here Trinity" and my reply was "we hope that everytime, but unfortunately we end up here again and again". Trinity cries at the sight of her doctors, it is almost like she knows what is to come and that absolutely breaks my heart. Now I have to have her eyes checked and for most people that seems like a minor task, but to me it seems HUGE. Everytime I take Trinity to get checked by doctors I always walk out with bad news. My daughter will possibly not walk and if she does it will be a long time before she gets the strength to. So for me by taking her to the eye doctor I have a fear that we will add one more disability to the list and she will need glasses to help her see better. "I DON'T WANT TO HEAR THAT!!" But I know I have to take her because the Neurosurgeon says so and her PT says that she needs to be seen also.

Please don't feel sorry for me, but for Trinity. I don't want pity I just want prayer! I am angry, frustrated, and MAD! Why my beautiful daughter? I will tell you what I don't want to hear right now, "Because God has a GREAT plan for her". Why does Trinity have to be used to benefit other people? Put your child in Trinity's shoes for just a minute. Think of all the wonderful things your kids have experienced and got to do. Now imagine how their life would be if your child was Trinity. It sucks and it is hard! I always tell myself that there is someone that has it worse then us, but I still find myself frustrated because I am still living this everyday. Don't get me wrong, I LOVE and TRUST God and his plan for Trinity, but sometimes I just get to a BREAKING point and want to scream! Maybe I should get a punching bag?!?!

Okay enough with this post I am done complaining and whining.

Aubree is finally back home and we are so happy to be together again!! We need to detox her of all the sugar she ate at both grandparent's! Have a great week and I will try to update you all more as we have some appointments this week.

Post Surgery

I don't have much new to report. Trinity's surgery went great. The only not so great part about it is that the shunt was working fine, so it is not the problem. They did replace the valve. They said that the one that she had was an adult size one and so they replaced it with a smaller one. She has a larger incision and they moved it more behind her ear so it won't bother her in the future. She's doing pretty good, but is heavily medicated. They just got done doing a chest x-ray to see if she has fluid in her lungs. She has been getting really raspy in her chest and they are a little concerned because she vomited last night and they are afraid she may have sucked some of it back into her lungs. Hopefully we will know something soon. If that comes back fine then we should get to go home this afternoon. She has been such a trooper like always.

So you are probably asking what the plan is from here? Good question, I talked to one of the residents (because you never talk to the actual doctor around here) he said he was going to talk to Dr. Haines about what should be done next. I am not real sure who's court this is in now, but we will find an answer as to why she has been vomiting. I will say that over the last 4 days she has been doing really good with keeping things down, so maybe the GREAT Physician is already working and we don't need any answers! I will keep you posted with what the plans are.

Sorry we don't have any pictures, but I still don't have a camera and Shannon is hopefully going to bring me one today! Please keep Trinity in your prayers as she recovers and as we find answers for why she is vomiting and losing weight.

Updated:
Trinity will be staying overnight tonight in the hospital. They want to watch her and just make sure that the raspy noise that they are hearing starts to clear up. Her chest x-ray looks good so they are not overly concerned, but want to be safe, rather then sorry!

Surgery on Monday

Hello to all! Well you can tell by the title that I don't have real good news. Trinity will be having a shunt revision done on Monday morning by Dr. Haines.

On Thursday night I was feeding Trinity a bottle and after eating it she sat up to burp and vomited and vomited and VOMITED. It was everywhere including her, me and the chair. Then on Friday morning she ate a bottle again and do I have to say it, yes she vomited AGAIN! :( So I got on the phone with our neurosurgeon's office and they had us come in to do a CAT scan. I really don't know how to explain the rest of this so bare with me it is kinda confusing. The CAT scan really didn't show us anything to be concerned about. Her ventricles look good and there is no fluid around the brain that is of concern, but they are concerned that there could be fluid collecting down by where her opening was and we just can't see it. Dr. Haines feels that it is necessary to go in and revise her shunt. In fact he wants to replace the whole thing with a totally new kind of shunt. So the question is, will this fix the problem of her vomiting? Well we don't really know the answer to that question. We are praying that it does, but for now Dr. Haines wants to start with the shunt and go from there. At this point of all the variables that could be causing Trinity to vomit, this is the most probable. The next area of concern beyond her shunt is her upper and lower GI track. While it doesn't feel good to have to have surgery based on probability, her shunt would be a much easier fix to the problem.

Surgery starts at 9:30 and we have to be there at 7:30 am. We are blessed to have such a great family that will keep Aubree for us. She is going to be staying in Iowa for the week so we don't have to worry about finding a place for her. Please keep Trinity and our family in your prayers on Monday.

Shriners Visit and Easter Weekend

On Friday we had our visit at Shriners where Trinity was seen by the Neurosurgeon and the Urologist. I will start with the good news that we have been able to take Trinity off of the antibiotic that she has been on to prevent urinary tract infections. They did a Urodynamic test on her. Most urodynamic testing focuses on the bladder’s ability to empty steadily and completely. Unfortunately the test was not completely accurate because it is very difficult to keep an infant from moving during the test, but the doctor felt like with this test and the ultrasound they did back in January, that Trinity has no issues right now with urinating and they will retest her in 6 months.

As for the Neurosurgeon, we are still up in the air on what is going on with Trinity. Over the past 2 weeks we have had some issues with Trinity vomiting. It can be everday or everyother. She has been losing weight also of which raises a red flag to the doctors. It could be a number of things going on so they need to talk with Trinity's regular Neurosurgeon (Dr. Haines) and see what he thinks. As of now Trinity has an MRI on the 22nd, but they would like to get it done sooner if at all possible. They also want to do a swallow study to see if it could be reflux, have her eyes checked to see if it could be her eyes, and do an x-ray to check her vocal cords. It could also be the brainstem causing these problems or her shunt. So I really can't tell you a lot other then we are just waiting on the doctors to decide what to do next. I know it is hard to tell from the pictures, but Trinity has lost some weight ever since her last surgery. I can tell when I put her diapers on and when she wears some of her 12mth clothes. Please pray for Trinity and that the doctors would be able to figure out what is going on.


Aubree and Trinity in their Easter dresses!!

We had a "Great" Easter weekend together as a family!! I don't know if you remember but last year we spent it in the hospital and Aubree was in Iowa. It was really nice here this weekend so we got to spend a lot of time outside. We took the girls to the park on Saturday and Trinity got to swing on the swings for the first time (of course we had to hold her), but she smiled the whole time!! We went to church Sunday morning, and never thought I would see the day where I was in a congregation of about 1100 people for just one service. Did I mention there were 7 different services?!? After church we had the pleasure of joining our landlord and his family for lunch. Aubree enjoyed playing with all the kids and I am pretty sure all the kids enjoyed Aubree!!

Hope you all had a blessed Easter weekend!!

"We Appreciate You"

Trinty in her corner chair from Early Childhood

A couple weeks ago I had the pleasure of paying off our last hospital/doctor bill from 2008. As I was writing out the check I thought how this would not have been possible if we didn't have such GREAT people that have supported us financially. I know we say "Thank You" a lot, but we really mean it! We would be burdened with a huge amount of debt if people hadn't stepped up to the plate to help us out. Everyday I am reminded of what wonderful people there are that are praying for and supporting our little girl. Now that Trinity is one I find myself reflecting back to a year ago and thinking of what we were doing on that day, and sometimes I really don't like to think about it. But I am ever so grateful for the wonderful doctors and nurses that took care of our baby and helped her get to where she is today. I miss Dr. Gilmer soooo much, but I know that the move to Minnesota is what was best for our family.

The hospital is not a fun place to spend with your little ones and everyday as I read the blog "My Charming Kids" I think of how crappy it is and emotional when you don't know "why" this is happening to your little angel. Please lift this family up in your prayers and visit there blog when you have time www.mycharmingkids.blogspot.com The mother of Stellan is such a real person in all of her posts. She is not hiding her feelings and I thank her for that, because it makes it easier for us that do to start opening up. When you see her latest post and the video that she made, trust me, you better have some tissues laying close by.

Thanks for checking in on us! As I am writing this we are getting snow, not really what I wanted to see on April 1st.


Trinity and Shaye (or as Aubree says Shaye Bear!)

Physical Therapy

I know it has been a long time since we last updated you. Trinity has been a busy little girl with doing her PT twice a week. She has been such a trooper and doing a great job! They are mostly working on her upper body strength and getting her to build those muscles so she can roll and sit. She tends to cry the whole time (which is an hour), but I am trying really hard to allow her to cry and be strong for the both of us. I never knew it would be so hard to push your child, but it is and I don't think it will ever get any easier. Today they really pushed Trinity and did a number of different things with her. They have a variety of things that help her, like a wedge, corner chair, tube, and some other things that I am struggling to come up with a name for them. Last week I sat her in the corner chair (that has a tray so she can play with toys) and put her next to Aubree while she was playing with her barbies. Aubree put some of her barbies on Trinity's tray and they played together for about an hour. It was the cutest thing and made my day!! I wish I could take pictures for you, but we need to go buy a new camera, so hopefully I will have some pics up for you soon.

Yesterday was also a milestone for Trinity. We bought her a big girl car seat! I know some of you are thinking what is the big deal, but trust me this is a BIG deal. We have been struggling on what we were going to do when Trinity grew out of the infant car seat, but yesterday during our trip to Target I decided to put Trinity in the shopping cart sitting up and then strapping her in. I wish I would have had a video camera with me so you all could have seen the expression on her face. She loved it!! I took a picture with my phone camera and I am trying to figure out how to get it on my computer so when I do I will make sure to post it, but it was the cutest thing! I also found at Target a shopping cart cover so Trinity can sit in that and then there are straps that will go over her shoulders and around her tummy, I haven't tried it yet, but I am praying that it will work. It was a great day for me because it means that Trinity is getting stronger and that we are moving in the right direction (for once). We haven't got to try the car seat yet, but when we make our 4 1/2hr trip back to Iowa tomorrow she will get plenty of time in it. Aubree is really looking forward to it, she thinks that they will be able to play with eachother.

We don't have a lot coming up. Trinity has an appointment at Shriners on April 10th and then an MRI on the 22nd. She will continue her PT twice a week when we get back from Iowa. I ask that you would continue to keep Trinity in your prayers. Everyday is a struggle for her and for us as a family. Your prayers help us be lifted up everyday!

When is Spring?

I ask the question "When is Spring?" because once again Trinity has a really bad cold. It started last week Tuesday and Shannon and I thought that we would let her try to fight it off, but unfortunately it only got worst. On Monday I took her into the Pediatrician to find that she has a slight case of pneumonia. Basically when Trinity gets a cold it is going to be very hard for her to fight it off because she has such a severe case of scoliosis. With scoliosis it is hard for them to get enough air into their lungs to fight off the infections. When they did the x-ray on her lungs they found some spots on them so they are putting her on an antibiotic and we are doing some breathing treatments. So I guess until Trinity gets the scoliosis repaired she will always have a hard time with colds. We are doing some checking to see if Shriners can provide us with a nebulizer otherwise we will probably have to purchase one, since Trinity will always struggle with colds.

I know I haven't updated in a while about Trinity so I am going to backup a couple weeks. Trinity was accepted into the Minnetonka school district for Early Childhood Intervention. They will be doing her PT and OT. The great thing about this is that they come to our house to work with her and they also work with Aubree so she can learn how to interact with Trinity. Today was her first official therapy with OT and it went great. They watched her eat some baby food and a bottle. They also brought what is called a corner chair that has a tray so Trinity can play with toys sitting up and they are at a level that she can reach them. She did a great job in this, especially since she is sick. They were very impressed with how Trinity was doing and they have so many different ideas. It really makes me excited! Hopefully soon we can have her sitting up on her own so she can have some independence! The Physical Therapist comes on Thursday morning and that will be our first time meeting him. It is so nice to know that there are programs out there to help kids with special needs so they can do the things that other kids can. It helps reduce the stress on the parents.

Trinity also had her one year checkup a couple of weeks ago and they had some concerns. She lost some weight after the last surgery and has not been gaining any back. They are going to recheck her in a couple weeks and if she don't gain any then they are going to do a swallow study to see if she has any reflux problems. This cold is not helping any because Trinity is not that interested in eating, but hopefully she will start feeling better and start eating more.

If you think of Trinity please pray that she would start feeling better and that her lungs would clear up. Even though she feels crummy she still has such a big smile on her face!

Trinity's Special Day!!

We had a "GREAT" birthday party for Trinity Saturday night. It was nice to have our family and friends present to help us celebrate such a special birthday. It really is hard to believe that she is already one. It has definitely been a roller coaster ride for Trinity, but she has pulled through everything with a beautiful smile on her face. As I look back to a year ago tonight and think of us sitting in the waiting room waiting for Trinity's first surgery to be done, little did we know that it was going to be the first of many. The day Trinity was born he gave us the most wonderful miracle. Her life has been a gift to so many people and yet she doesn't know it.
Here are some pictures from Trinity's first birthday party!


Trinity with one of her presents. She had fun opening presents.


We had a little cake made just for Trinity. It was so much fun to watch her dig into it and get it all over. She never stuck her hands in her mouth, but she got it in her hair.





Trinity with her birthday cake made by Raenelle Bryan. It was fantastic!!

Thanks for the emails and posts wishing Trinity a "Happy Birthday"! What a great community of family and friends we have.
Love~The Arthur's

Happy Birthday Trinity!!

Today is Trinity's 1st Birthday!! We are so excited to be in Iowa and celebrating with our family and friends. Thank you for all of your support over the last year. Everyday we feel your prayers being uplifted. I will be putting a post in the next couple days with pictures from Trinity's BIG day!
Love to All!

Happy Belated V-Day!!

We hope that everyone had a great V-Day!! We enjoyed a quite weekend with not a lot going on. We took the girls out for breakfast yesterday and then I made a nice supper last night. The girls each got a little toy from eachother. Aubree picked out Trinity's gift and did a great job! She got stacking stars that lights up and plays music. Trinity really likes playing with it and Aubree does too! We had a great church service this morning. I don't know if I have mentioned this before, but we really enjoy the new church we found. We are excited to get involved and start meeting new people.

This past week we had Trinity's 2 week checkup with Dr. Haines. Everything looked really good and Trinity is healing very nicely. They will do an MRI in April to check the Chiari and also to check her shunt and make sure it is working like it should be. We didn't get a lot of time with him because he had an emergency surgery to get to. Hopefully next time we can spend some more time talking to him about some of our concerns. Trinity has been struggling this week with a bad cold. We have been to the pediatrician once this week and it looks like we will be making another trip tomorrow. It is all in her chest and she struggles to breath. They did an x-ray last week that looked good, but she has not improved and I would like to get this resolved soon.

This Wednesday we have an interview with Early Childhood to help with PT and OT. We are really looking forward to this in hopes that we can start getting Trinity some strength to do more things. We also go to Shriners on Thursday to get her new chair! This chair will help her to sit up in her highchair and stroller. I am so amazed at all the things they can do to make it easier for a child with disabilities even at the age of 12 months.

I got a nice "Thank You" card from Shriners for all the pop tabs that have been donated. This goes out to all of you that have helped us with donating these. I have a box to bring for my next visit. Everytime I get to drop them off I get so much joy in seeing the faces of the people I give them to. Just know that what you are doing is helping put another child in a wheelchair!

We are getting excited for Trinity's 1st Birthday! We can hardly believe that she is going to ONE!! I look forward to doing a post on Trinity's first year of life. We get to come back to Iowa to celebrate with our family and friends.

Have a great week! :)

"Rejoice Always"

I put "Rejoice Always" in the title because it is something I have to say to myself everyday, even when things seem hopeless, I have to remember to rejoice! I say this because the last week has been such a guessing game with Trinity. Unfortunately she has still had some vomiting issues and choking. Maybe this is something we will deal with for the rest of her life, or maybe it is going to take awhile to change. With the vomiting it does make us concerned that something could be wrong with her shunt, but we are watching for any other signs that come with a shunt malfunction. I swear it is such a guessing game. Yesterday I was doing some PT with her on the floor and when I layed her on her tummy it was a wake-up call to me that Trinity had lost her neck strength, which is a given considering they had to cut through her muscles back there. So we have been working on restrengthening those muscles, which does not make her very happy. This would be the time that I wish I was in Iowa so our favorite PT could help us, "Oh, Paula"!!

We had the privilege of having my parents and Grandma Shearer here for a week to help out and then Shannon's parents came Friday night with a surprise for Aubree. They brought Aubree's cousin Selah with them. They had a lot of fun playing together! They had to leave yesterday, which did not make Aubree a very happy girl for about an hour. She wanted to know when her Grandma was coming back.

We have a pretty uneventful week here at home, which is fine by me. Trinity needs all the rest she can get and if she is stimulated too much she gets kinda fussy by the end of the day. Her incision is looking and healing really good. We will have our 2 week checkup with Dr. Haines on Feb. 11th.

We Are Home!!

Trinity got to come home yesterday around 4:00pm. She continues to have some pain, but we are trying to control that with Tylenol and lots of sleep. She had an issue last night before bedtime with vomiting, but so far today she has been doing really good and keeping her food down. The thought has crossed our mind if something might be wrong with her shunt, but we are going to watch her the next couple days and see how she does.

We are all really glad to be home and sleeping in our own beds. As much as we wanted to come home it was also difficult to leave our roommate behind. Aubree wanted to take him home with us, but unfortunately that is not the way it works. Before we headed home we stopped by Shriner's to drop off some pop tabs. They were so happy with the amount that I brought in. "Thank You" to everyone for your help. I think about how much it costs for healthcare for kids with health issues and then to add equipment on top of that, Shriner's makes it possible for those that can not afford to still get good healthcare and I feel like that is something worth supporting. Who knows, someday Trinity might be one of those kids that needs a wheelchair and with your help Shriner's can provide her with one!

Thanks for all the prayers over the last week and last year! I can't believe in a month Trinity is going to be one, it just don't seem possible. What a blessing God gave us!

Have a good week and we will keep you all posted as Trinity continues to recover!

Recovery

It has been a long past three days for Trinity. Friday night Shannon stayed overnight with Trinity so I could get some much needed sleep. On Friday Trinity struggled keeping anything down and as the day and night went on this continued. She became dehydrated which required them to do an IV so they could get some fluids in her. Putting an IV in Trinity does not go real well and with that being said it took a number of people to finally find a good vein to put one in (with the help of an ultrasound machine). So at 9:30 pm they told Shannon she was dehydrated and about 4hrs later they finally got fluids in her, I don't think I have to tell you how unhappy daddy was. Trinity has ran a temp since having surgery until late afternoon on Saturday. I think seeing her big sister Aubree really helped Trinity, because after giving Trinity a bath we started to see the old Trinity. She gave us little smiles and even babbled a little.


Last night I stayed with Trinity. She really had a pretty good night other then her oxygen level would go down into the low 80's when she was sleeping. They think it has to do with the morphine, but just to make sure they blew oxygen on her all night. She slept from 9:00-7:00 besides the few times the nurses had to do the vitals. The little boy next to her was also a good sleeper, he had more things done to him in the night then in the daytime, I don't know how he slept through all the noise the nurses were making. I don't know the boys situation, but I know that he has cancer, is 10months old, and has been here for the last 8 months. The nurses have pretty much raised him and we can see why. We have been his roommate for 2 days and the mom has been here for a total of 15 minutes. When I was calming Trinity down last night and watching her sleep, I just thought of the little boy next to us and how neglected he must feel. It just brought me to tears to think of the love and affection he is missing out on. You can see that the nurses are really good with him. They all take time holding him and he spends most of his time out at the nurses station in his wagon.

As I write this post, Trinity is playing with her balloon that Nana and Papa got her and babbling. It is so nice to see her getting back to her old self. The Neurosurgeons just made their rounds and so far everything looks really good. She is having a little drainage from her incision, but they are going to keep an eye on it. They are also going to lower her fluids through the IV and we might try some baby food tonight for supper. Things are slowly starting to look up for Miss Trinity Sue! Thanks again for your continued prayers. Hopefully our next post will be that Trinity is going home!

Surgery/PICU/Pediatric Unit

Good Evening! Sorry we didn't get you all updated last night, but because of how long it took for her to get out of surgery and recovery we didn't get settled in until late.
We started out the morning at about 3:30am and woke Trinity up around 4:20am to a nice bath with her pre-op shampoo. She did not think this was a very nice way to wake her up. We got to the hospital around 5:30am. They did all the pre-op questions and then took Trinity away to surgery around 6:30am. We waited anxiously to hear something all morning, finally around 11:15 we had made some contact with the nurse. She informed us that surgery did not get started until 10:25 because they had such a hard time getting an IV started in her. So with that being said, what we thought was going to be a 4 hour surgery turned into being almost 8 hours. The doctor came out around 2:00 and told us everything had gone great. They actually had to remove more then they thought they would. They removed the piece of skull that they had planned on and then found that the top two vertabraes were in the way causing a pinch on the stem of the brain. So they had to remove the top two bones to disconnect the brain stem. During the surgery they were fortunate enough to use a machine to scan Trinity after they were done to make sure that they removed everything that was causing interference. This helps to give them an preview of what everything will look like once the surgery is complete. Dr haines did confirm with us that she has one of the more severe cases of chiari malformation that he has seen.

The first night after surgery was a long one for Mirands. Once again Trinity was sharing a room with two other girls. Very ironicly, same as the last surgery, we shared a room with a 15 year girl with a rair disease that I had never heard of. Along with the disease she had a severe case of scoliosis. She has recently had a surgery to correct the 75 degree bend in her back. To put this in perspective, Trinity has a 38 degree bend in her back and looking at this on an x-ray it looks like a lazy letter C. At the age of 15 she weighed 59 pounds. The bend in her back was so severe she could eat very little because of the pressure her rib cage put on her stomach. Needless to say, she could use some prayers.

Today has been a fairly good day. Trinity was able to get out of ICU at about 1:00 today. She has been running a fever off and on all day and she has not been eating real well, but the doctor said that was to be expected. Dr. Haines stopped by this evening and said he thought everything was looking good, and he was pleased with her progression. Tonight I finally made Miranda go home to sleep and T sue and I are hanging out here in the hospital and life is good. Thanks to everyone for your thoughts and prayers. God has one again blessed us and we have so much to be thankful for.

Shriner's Hospital

As I am sitting here writing this post we are getting a ton of snow and I have a little helper sitting in my lap, Trinity! She wanted in on the comments I made about our visit on Friday to Shriner's.

As most of you know we had our first appointment with Shriner's last Friday. It was a long day of seeing many doctors, but it was a refreshing day for us also. I really don't know where to begin. We had our first appointment at 9:00 am where Trinity had an x-ray and ultrasound done. After we were done with this we were called into a long hallway with about 6 different patient rooms. We were one of about 8 families that were being seen that day. I don't know that all of them were spina bifida, but we did meet one family that has a 2 year old son that has spina bifida and it is the same location as Trinity's (L5-S1). We got to spend some time talking to them between appointments. I don't want to drag this out any longer then it needs to be so I am only going to give you the highlights of the day. The x-ray showed that Trinity has a severe curvature to her spine (scoliosis). Her curvature is about 38%, not real good. For most of you that have spent some time with Trinity you will notice that she tends to lean to the right a lot and that is why. Nothing will be done about this right now because of her upcoming surgery, but we go back in 3 months and they may look at putting her in an upperbody brace. The ultrasound looked great. Trinity is voiding like she should be and her kidneys look good. We have an appointment scheduled in February where they would do some different test on her bladder and bowels, but the Urologist that we seen said he didn't see any reason for the test to be done and that they would do some testing in about 3 months. So Shannon and I are going to pray about this, but we feel pretty good about listening to the doctor at Shriner's and waiting 3 months. We will keep her on the Bactrim (anti-biotic for her bladder) for now, but he hopes to get her off of it so she can get her immune system up. We also met with a Neurologist, Neurosurgeon, and an Orthopedic Surgeon. We plan to keep Dr. Haines, from the UofM for now. We feel more comfortable with him and the fact that Dr. Gilmer referred us to him.

An exciting point in our day was meeting with the PT and OT. They are having a chair made for Trinity where she will be able to situp in her highchair and her stroller! We are really excited for this because we feel like Trinity spends a lot of time having to be on her back since she can not situp. They also gave us a chair that can go in the tub so Trinity can take baths and we can also use it in our family room and she can watch some cartoons with Aubree while being strapped in her chair. I will be sure to take some pictures of these so you can see what I am talking about. They have to make the other chair and it will be done in about a month.

We were searching all week for a place for Aubree to go so we didn't have to take her with us, but God knew what he was doing. We were glad that Aubree was there. She got to see kids of all different needs and made some friends along the way. I can say that for once I felt like we were not a minority and we fit right in with all the other families. I really wish I could have had a video camera so you could have seen how our day went. It was a GREAT day! I felt renewed and refreshed! How great is it that we have hospitals in this world that help little kids that are in need of so much and do it at no cost to the patient. You don't have to worry about if your insurance company is going to pay for it, you just go with the piece of mind that they are going to give you the best care for your precious child.

I got the chance to drop of some pop tabs and I talked to the guy about where the money goes for this. The Women's Auxiliary takes them to a donation center where they get money for them. They then use the money to help buy wheelchairs for kids. How great is that! So don't throw those tabs away, SAVE, SAVE, SAVE!!!!

I know this is a pretty long post, but I wanted to fill you in on our day. I know there is still a ton I want to say, but I will save it for another post. Have a great week!

Happy New Year!!

We made it home last night from our week and a half vacation in Iowa! We had a good time with family and friends, but are excited to get back home and get into our normal routine. We had a GREAT Christmas and came home with a packed vehicle of toys for the girls (I am still trying to make room for them all). We also enjoyed celebrating the New Year with Shannon's sisters and their families. The adults got to go out to eat with no kids, thanks to a daring teenage girl, Liz (she is still probably trying to recover from the evening). We didn't have reservations until later in the evening so Trinity was in bed the whole time we were gone!

I realized today that I have not told you the date of Trinity's surgery. It is scheduled for January 22nd @ 7:30 am. We will have to be there at 5:30 am so it is going to be a long day for us. The surgery should take about 4hrs and we are guessing that she will be in the hospital about the same amount of time she was the last surgery.

We also get to go to Shriner's this Friday. Shannon and I are both excited to have Trinity evaluated there. This will be a full day of seeing different doctors.

I want to share with you the pictures I had taken of the girls. My good friend Sarah took the pictures. She is such a huge help when it comes to posing Trinity for photographs. The website is
http://www.photoreflect.com/pr3/store.aspx?p=36274
and the password is arthur

We pray that you had a Blessed Christmas and have a Happy New Year!!