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!!!!!!
Saturday, December 12, 2009
Friday, December 11, 2009
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
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
Thursday, December 10, 2009
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
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
Wednesday, December 9, 2009
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.
Tuesday, November 10, 2009
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.
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.
Monday, October 19, 2009
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!
Monday, September 28, 2009
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!
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!
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