Still in Kansas

Well, we have had an eventful and sad Christmas at home, but we made it through it with a lot of family and friends support and love. Torah and Jace are doing well. Both have had the runny noses and coughing. Torah's was so bad that I took her into Stat Care on Monday afternoon to see about getting her an antibiotic. Not much else new - hoping to be back in Wyoming on the 4th.

A Sad Day - I love you Mom!!

It is going to be a sad Christmas this year. My mom - Torah's grandmother - passed away on Wednesday, December 24th, 2008.
We love her so much and we are going to miss her so much more. We know that she has gone to a better place and is celebrating the birth of Jesus with Jesus and HIS father the Lord God Almighty. She is no longer in any pain or discomfort. We do not really know or understand what happend. My dad and sister were both at home when she passed and we think that she passed in her sleep. I was able to see and visit with her briefly on Tuesday and she was able to hold and cuddle Torah (which was always her favorite time - she loved Torah so much). Now Torah will really have an angel watching over her all the time.

HOME

Well, we are finally home from the hospital. YEA!!!

Torah is doing really good and her blood level is up a few points (all on her own). You would not believe how much poop came out of this girl last night alone. It was like every time we checked on her she would be loaded and very stinky. At least we hope that she is cleaned out now and has passed all the blood that was left in her system. 

Pretty much everything is back to normal and she is happy to be home (except when Bob is around - she did not seem to happy to see him for some reason). 

I posted new pictures on Facebook and there is a link on the right hand side of this page that should take you to the pictures as well. Thanks so much for all of your prayers, thoughts, and support. We look forward to being back in Kansas soon and seeing all our friends and family!!

TCH Update

We are still here. Yesterday was a pretty eventful day between the problems with her IV on the right arm. I think it took 4 different people and 7 different tries to finally start another IV . . . that was not happy times and mama was not a happy camper. After all that was over - Torah did settle down and they finally got her 2nd blood transfusion in late last night.

This morning Torah had a an exam done of her stomach and duodenum (upper intestine) called Esophagogastroduodenoscopy. The GI doctors (LIU and BRUMBAUGH) were looking for any active bleeding or ulcers in her stomach area, esophagus, and upper intestine (duodenum). Good news is that they did not find any active or new blood, Torah's esophagus looked great and her stomach looked good as well. They did find a ulcer in the duodenum, but it was not irritated or bleeding. The doctors are not really sure where all the blood came from, but they have decided to up her Previcid an they will also give her some Carafate to coat her stomach and help anything heal over the next week or so. Dr. B told me that they want to keep her over night to make sure that she recovers from the exam and also so that they can test her blood levels a few more times to make sure that they stay up. I think that Friday, when we were at the Douglas ER, Torah's blood level was around 15 or less and yesterday before they started the next blood transfusion (around 6pm) her level was around 21. Today when they tested her - the level was back up to 30, so lets just hope that it stays up.
I do not think that much else will go on today. The nurse was worried about a upper respitory infection and wanted Respitory therapy to suction Torah out a few times during the day. My only worry with that is that they will want to do the deep suctioning (which will not help) and if they do - they do not dismiss any kid that has had that type of treatment in the last 24 hours. So, hopefully they just stick to the nose and mouth area. We seem to through this every visit here at TCH.
Thanks again for all the thoughts and prayers for Torah, they have helped more than you know!

TCH Hospital UPDATE!!!

Well, here is all that has happend since I left for the ER yesterday afternoon:

I checked into the Douglas ER around 1pm and right off the bat they could tell that she was anemic because of how pale she was (we are talking white as a ghost - even her lips). After going over all the info and symptoms that she had, the doctor (McKee) did a stool sample to check for blood and it did come back positive. He proceeded to order lab work to be done to pretty much check for everything. After an hour or so, he came back with the results and told me that everything looked normal and she was not dehyrdated at all (which is good for her). The only thing that was not normal was her blood level. He told me that she had probably only a thrid of half of the blood that she needed and that she would be getting a blood transfusion. In the meantime, all the nurses working that night were tying to start an IV so that they could both draw blood and also give blood throught the same line. Well, little miss Torah's veins did not want to cooperate and they ended up having to call an anstheiologist to come and insert the line (no easy task - but he did get it on the first poke . . . with a little digging). The ER doctor had pretty much told me at this point that they would be sending Torah to TCH (The Childrens Hospital) in Aurora, CO to be taken care of (I think this was around 3 or 4 pm).
Bob was getting ready to head to work his 4 night shifts and we were trying to deceide at this point what to do with Jace. I had figured out in my mind that I could take him with me and somehow I would figure out what to do with him (hee hee - if you know Jace very well - you should be laughing about now). Well, thank God above - our friends in town called me and said that they would be willing to watch Jace for us while Bob worked. So THANK YOU SO MUCH Robin and Mark! Love you guys!!! Oh, and I want to thank Torah's 2nd shift nurse Annie - she was so awesome and just made me feel so at ease with everything (it is nurses like her that make all this a lot easier).
Some where around 7 pm the ER in Douglas started Torah on her blood transfusion and about an hour later her color started to pick up. YEA!!! Now the question is . . . where did the blood come from?? Some time around 9 pm the EMS team and the Flight For Life team out of Denver showed up to pick up Torah and transport her once again to TCH by plane. I at that time took off and hit the road for a 3 or more hour trip. I was worried at first because the radar showed that I was going to be going through some pretty bad weather and snow on the way down . . . I just did not look forward to that! Thank God again (he has been so wonderful this trip) the roads were 98% clear of any snow and ice and I made it to TCH in great time.
When I arrived at TCH's ER around 12:30 - Torah's nurse (Jamie) was just getting ready to flush out Torah's stomach. The doctors wanted to see nothing but clear liquids coming ouf of her stomach. So Jamie poceeded to pump in abotu 30 cc's of irrigation through the g-tube and then once that was in would then extract the fluid back through the g-tube in to the syringe . . . you would not belive what she pulled out - Dark brown (like dark chocolate or coffee) fluid with a coffee grain consistancy to it (which as it has been explained to me - is due to blood in the stomach). There was no fresh red blood, so they are either thinking it could be a ulcer or some kind of GI problem (not sure on all that - but will post more later when I know). I have met with Torah's current floor doctors this morning and one of them remembered us from back in January (that was nice). I am still waiting to meet with the GI doctors and I am still not sure what kind of test they will do yet.
The only thing new as of about an hour ago is her IV that was set yesterday came out of the vein and now her arm looks like a ballon (the skin is about as tight as it can get). They are not worried, only because she was only getting fluids through the IV and not any medication. I also think that they are going to wait and put in another IV when they do whatever test that they will do (hopefully today). Oh, and I think that she will also be getting another blood transfusion today as well because her levels are not up to where they need to be yet and she is starting to look pale again.
Not sure if I will post again today or not and I am not sure if the library will be open tomorrow for me to get back on the internet . . . so if you do not see any new post this afternoon or tomorrow then check back Monday - I will post as soon as I can.
Thanks again for all the prayers and support for Torah and we hope to be home in KS for the holidays -but that is still unkown at this time.

Possible ER visit

Well, we have been home from TCH for two days now and Torah seems to be getting worse. Here are some of her symtoms: 

~ possible sinus infection (tons of green snot)

~ pale (she looks very white)

~ black stools

~ possible dehydration

~ dark (brown/black) coffee ground like substance coming out of her stomach, either through her g-tube or her throwing it up (dr office said this is due to blood in the stomach)

~ not able to eat a lot 

~ mucus is thicker - we have suctioned her out a few times just to clear her mouth

~ sleeping and sleeping and sleeping

Now if you go back to the blood in the stomach - it kind of makes sense to blame this on the tube down her throat during the MRI . . . but that could not explain it always being in her stomach before the MRI. When I changed her g-tube last weekend, her stomach just started to drain tons of the dark brown coffee ground stuff out. It had never done that before and I was a little concerned - but she was not having problems with her reflux . . . so I did not worry to much. Now I wonder if I should have been worried  :o(

So I am trying to get things finished up here at the house so that I can run her over to the ER for the doctors there to look at her and figure out if we need to be worried or not. Hopefully there will be a doctor working that will listen to my concerns instead of just telling me that there is nothing wrong and sending us home. Will update later - so check back soon!

TCH Visit

Well, we made it to Denver and back home safely. Luckily the weather did not get bad until today. Now the question is weather or not we will make it home for Christmas. The weather does not look like it is going to be nice between now and then. 

We arrived at TCH around 8am and after we checked in and gone through security, we then headed over to Dr.E's office for her first appointment. She was so happy with Torah's progress and was amazed at how much Torah had grown since June. Torah weighed in at 30.3 pounds and is 35.5 inches long. That pretty much puts her in the 95th percentile for her height and weight. Even her head circumference was in the 90th percentile. (on a side note: I measured Jace the other day and he is standing at 41 inches - so Torah is not far behind him). Torah's feedings were not changed at all since she is pretty much were she needs to be and even though she is pretty long - she has chunked up and her thighs are not skinny anymore! The doctor did order another spine x-ray (to follow up the one that was done in June) to make sure Torah's spine has not curved anymore. Her spine dose have a curve but it is thought to be because of her low muscle tone.  The doctor also ordered some lab work and a bone age xray to test for some hormone levels that Torah should not have yet. I have not heard the results from those test yet. 

After the appointment with Dr. E and all her xray and labs - we then went to meet with Dr. P - the Neurologist. Torah is at the weight mark to up her Keppra medication, but since we have not seen any type of seizure activity for a few months, the doctor decided to keep the Keppra at the same dosage.  After that appointment we were done for Day one. Torah did very well all day and was laughing for everyone except Dr. P - she was sleeping for that visit. After all the appointments were done we checked into the motel and took a short nap - then headed off to the Bass Pro Shop to do some small shopping and so that the kids could see Santa (see picture above).

On Day 2 - we started the day with Torah's MRI of the brain. The anesthesiologist was worried because Torah had a pretty bad cough. I told them that it was pretty normal for her and every doctor that I asked about the cough did not seemed worried and said that there was nothing to do for the cough. So they went ahead with the MRI. During the test they did put a tube in her throat to keep her air way open and I think that they must have caused some bleeding, because when she was in recovery - I noticed that there was quite a bit of blood around her g-tube site (which is not normal). The doctors and nurses said that they would have done nothing to cause it to bleed. We ended up figuring out that the blood from her throat went into her stomach and came out the g-tube site (I think what was left made its way out with her stools that night because I have never seen a poopy diaper like it and I have seen my fair share of poop!). After the MRI was done and we ate lunch - we went up to the Rehab clinic to meet with Dr. A. She went over the spine xray with us and also got us a script to order a special sitting chair (see below) 

She is over all doing really well and the doctors were all impressed on how much she could do. I am still waiting for the results on the MRI, Lab work and Bone Age test - but will let you all know soon. Thanks for all the prayers and support for us and Torah. We look forward to seeing family and friends at Christmas when we hopefully make our trip back to Kansas. 

Change in Plans

Well, there was a change in plans with Torah's medication - but it is a good change. I received a call from our local pharmacy yesterday saying that they could now fill the Previcid and it would only cost me 10 dollars. I think I about did a flip in the air!! The prescription coverage company that was going to fill the prescription and mail it to us told me that they could fill it for 40 dollars (one month supply) or 80 dollars (3 month supply). I thought that it was pretty pricey - but it was cheeper than what was previously quoted by the local pharmacy. So after getting the Rx filled at our local pharmacy, I called the company back and told them to NOT fill the Rx. This is the funny part (at least I was laughing) : The gal that I was talking to told me that there was no prescription and that there was no pre-authorization for the medication. So in other words, it is a good thing that our local pharmacy filled the Rx for us - other wise we would still be waiting . . . for nothing!

On a separate note - I met with a motorcycle group today that does fund raisers and poker runs for children (like Torah) that need help with finances. Torah's doctor gave us the information on them and said that she would be a good candidate. Since we are still waiting on the waiver process to be finalized (to find out weather she will qualify for that as well), I thought that we could use any and all help. About five of the groups members came by the house tonight to meet Torah and ask me some questions about her. After they meet all the children that have applied - they review all the information and contact everyone to let them know who they have picked for this year. They said that this will be the 9th year for them and they have really great results from all the bikers around the area. I will let you know what their decision was after they let me know. 

Some good news!

I talked to our prescription coverage group today and it sounds like the medication is covered if I order it through them . . . so we are going to try it for one month to make sure that it helps with the reflux. She did not have a good therapy session on Tuesday or Wednesday, and she seems to go every other week with her moods - so I hope that she does great next week since it will be one of the last sessions for the rest of the year. Torah is also working on getting some more teeth in and will soon have all but the back four molars. That could be the reason for all of her fits and reflux issues as well.  

The countdown to Christmas begins!

Torah working with her therapist Bonnie. She is getting better about being up on her hands and knees and actually putting weight on her hands - but we are only a mile down that road with many more miles to go! I was just thinking the other day that a year ago she could barely hold up her head on her own and now look at where she is!! 

Well, we made it through Thanksgiving. Stomachs full of food (Yes! Even Torah got her taste of the wonderful food as well). It snowed today and that helped me really get into the festive mood. I even decided to be one of those people that turn on their christmas lights (the day after thanksgiving).

We are still fighting with the insurance company on a few different things right now - but the major one is Torah's new reflux medication. Evidently liquid Previcid is a very expensive medication and even though it was pre-authorized and approved and should have been paid for by now, we are now waiting for it to go before the pre-authorization group to be looked at AGAIN because it cost more than 50 dollars. Should that not have been known information the first go around????? So it has been over 2 weeks since the doctor prescribed this medication and we are no where close to getting it. I just hope that it actually works and helps her reflux (otherwise I might feel really bad for all the work the doctors secretary went through to get this paid for).

I think she is growing again (or at least getting ready too). She has to be 30 pounds or more right now and her clothes that fit her a few weeks ago are now tight. I was hoping to make it through the winter season wearing the clothes I bought her about a month ago - but at this rate, who knows? I know . . . they grow and they grow and they grow (Jace has proven that to me already) but that still does not make it any easier on the budget.

Hope everyone had a wonderful Thanksgiving, we missed seeing all the family - but we are looking forward to Christmas time!

A Good Day!

The last few weeks during Torah's therapy sessions, she seems to be really not into the therapy. She always cried as soon as anyone would start working with her and I was starting to worry that she is just not wanting to work (like she figured out that if she cries - they will not make her work as hard). Well yesterday she had a great day and did very well. They found out that if they tear paper up she will laugh and I think we did that for about 15 minutes. She also did her crawling position good with no crying. After her OT we do her pool therapy and last week was not a good session - but yesterday she did great. She is getting stronger and is doing good with the sitting up, but she likes to throw her self backwards. 

Not much going on for our thanksgiving, I think we are just going to have a normal day and enjoy having a relaxing day. Although Bob is talking about heading up into the mountains to cut some more firewood before the snow gets bad. 

We hope everyone has a wonderful holiday with your family and friends!

Nothing new

Nothing new going on here with Torah or the rest of the family. I guess no news is good news.

We are still waiting to hear weather or not we can get her new reflux medication. The insurance company has pre-approved it, now we just need to wait and see if they will actually pay for it. So currently she is still using the Zantac and she continues to have problems with the gagging and retching, but I have figured out if I slowly feed her all through the day she does ok.

We are scheduled to head to The Children's Hospital in Denver in about 3 weeks. I am thinking that the appointments will turn out to be just routine check-ups, but in a way I am hoping that the doctors will find or discover something to help them figure out what is going on with her.

I have connected with so many new mom's of kids with ACC over Facebook. Knowing what some of their kids have gone through and overcome I am very positive that Torah will one day pull through all of this to where anyone that does not know her would never be able to tell that there is anything wrong.

She does get stronger everyday, but she is also becoming a 2 year old . . . meaning that she likes to throw crying fits when the therapist trying to work with her. If you try and make her do something that she does not want to do (like feel something with her hands - or put something in her mouth) she will let you know and pretty much cry the rest of the session. I am hoping that she will stop doing that soon, because the therapist feel so bad and dont want to work with her. As soon as the therapist leave the room or our house, Torah is back to her normal happy self until I try to work with her.

Getting Stronger

Here we were trying to get her to sit up on her own. She has done this by herself for about 20 seconds. She also has managed to use her back muscles to pull herself up into a sitting position. Now if we can just get the balance down we might be able to get somewhere!

Here is Torah working on her crawling . . . ok so not so much crawling, but she is getting better about getting up on her knees and hands. She actually stayed up on her own for a few seconds with no help yesterday during therapy.

We are still fighting the insurance company to cover the new reflux medication that the doctor ordered. Hopefully we will know something by the end of the week. She is back to her happy self and very active. She did good in her Occupational Therapy yesterday - but did not seem to care for the Pool Therapy (Jace had fun though!!).

We hope everyone has a great THANKSGIVING!!!

Still fighting the Reflux

Well, we went to the doctor again on Wednesday and because she is still having problems with the Reflux, the doctor decided to put her on Previcid instead of the Zantac. Well, surprise surprise - the insurance does not want to cover the Previcid.

I have put a call into the doctor to see what she wants to do. Otherwise I am stuck calling the insurance company to see if there is anyway to get the Previcid covered. 

Everyone is doing better and I think whatever virus hit us has left and we are now recovering. Torah still has a pretty bad cough, but the doctor does not seem concerned. We are also looking at some new Pediatricians in Casper (a town 40 miles to the West of us) to replace Torah's current PCP. We have till January to find a new doctor. I have asked several people for suggestions and have receive a good response, so I hope to find a new doctor soon.

Reflux

I took Torah in to see the doctor again today because her coughing and spitting up were not getting any better. We think that her reflux is acting up again. They did do another chest x-ray and some blood work which both came back normal. Torah's PCP called the Special Care doctor in Denver to see what needs to be done to help and they have decieded to put her back onto pump feeds (we have been doing bolus feeds for a few months) and also to bump up her reflux medication to full strength. We go back in a week for a follow up and if nothing seems to be helping then they will change the reflux medication for a week to see if that helps. After all that, if nothing else seems to help - then they will order a Upper GI to see if the fundo came loose.
We also found out that Torah's PCP will be leaving in January to go back to Minnesota. So we are on the look for a new PCP for her her in Douglas. Pray that we will be able to find one that will be able to work with Torah.
We did go back to Kansas for Halloween. Jace had a blast and we surprised a lot of family and friends. Torah did good with her health and I think that she enjoyed seeing her grandparents.

ER Visit

I took Torah to the ER last night because her coughing and vomiting was not getting better. I guess I was worried for nothing. The doctor ordered a chest x-ray and I guess that came back fine (they really did not say). I am wondering why they did not do any lab work - but that was their descision. They did order her some medication for a possible infection and also some to help with the vomiting. We were in and out pretty quick. 

Today she seems to act a bit better, but she is still coughing and retching about the same. I am trying to give her extra fluids to help with any dehydration. She slept quite a bit yesterday and is still taking a lot of naps today as well. Hopefully she will be better before the weekend. I have costumes for both of the kids to wear for Halloween. I think that they will have fun (as long as it is not freezing again this year). 

Never knowing what to do

Well Torah has been kind of sick again and I have been debating in my mind weather I should take her in to the ER to be seen by a doctor or not. Last week she was a little dehydrated and was retching and vomiting. She seemed to get better on Monday and besides being cranky and crying at night, she was pretty healthy. Mid-week she started to get congested and developed a small cough which as of this morning was worse (sounds like she is coughing up a lung). She also seemed a bit dehydrated again - so I pushed the fluids today and as of tonight she is doing better. She did do a bit of the retching and vomiting tonight at a party we went to. I am thinking that if she is still the same tomorrow (sunday) or if she gets worse, I will take her into the ER. 

New Address

I want to apologize for changing the address for Torah's Blog page. I was battling between two different e-mail address and I found a way to simplify everything - the down side was to change her Blog page address. I am going to post this everywhere I can so that anyone looking for this info will know where to find the new address for her old Blog page. I am also going to try and copy all of my other entries over to this new address. Just give me time :o)
Thanks again for all the prayers and thoughts for her and us. Oh, and I wanted to share a video I saw on youtube.com

http://www.youtube.com/watch?v=th6Njr-qkq0

I hope you enjoy and are as touched as much as I was.

Winter and Prayer

I appreciate all the thoughts and prayers that we get for her, as well as the comments (they always come when I need them the most). I think that there have been a lot of them lately - because she seemed to have a boost in her will and strength. It just makes me want to cry when I see her actually try to do what we want. I swear that she knows what we are talking about and tries to make herself do what we ask, but maybe her brain is not able to communicate to the rest of her body as it should. 

I am trying to set up her 6 month check up down in Denver - hopefully some time in Nov, Dec, or January. Not really sure if anything exciting or big will happen that visit. I think that they are at a stand still on a real diagnosis for her for now (unless something pops out at them and points them in a different direction).

Winter is coming and I am starting to worry more about her getting sick. It seems like even the common cold can cause her body to make it into something a lot worse. We always worry about pneumonia. Even though she really does not eat by mouth - she still does retch or vomit and that can get into her lungs just as easy as food (if she ate food). This is the second year that we have given her a flu shot - so I am hoping that will help her in that area. 

I do have a prayer request that I am in need of. If by chance Torah was to get sick and we were to go back to Denver, this is what could possibly happen. Torah would get flown to TCH with the flight crew and Jace and I would have to drive down. Unless Bob had his normal days off he would have to stay and work so that we would not be short money. The hospital is really no place for Jace to be staying with me (gets pretty boring - since we have been down there for no less then 14 days at a time). Granny Jo is working now and is not able to take off to come up and watch Jace. So what I am praying for is to meet someone that could help me in times like this. I did have a friend that helped me earlier this year with Jace (and it was a God met need), but we did not seem to fit into her life plans and she is no longer an option. I am visiting some other churches here in Douglas (trying to meet other people) and hoping that I will meet who God wants in my life. So just pray that I do meet someone soon. I also could use a friend to talk to and do things with in addition to the other need.

New Standing Device

We have been able to borrow a unit that helps Torah stand up on her feet - or at least put weight on her lower body. Here is a picture of it. She did not seem to like it at first, but now she seems to get restless on the floor and wants to stand up or sit in her chair. I am glad that she is getting stronger everyday. I thank God for all that he has done.

Stronger Everyday!

Torah is getting stronger and stronger everyday it seems. She is also growing so fast! We are working with her to try and sit up and play with toys - she actually does this very well. We just recently got ahold of a standing unit (a device that will help her stand up and put weight on her legs and feet). The development center is letting us borrow one until we are able to get one of our own. She is only able to stand up in it for 5-10 minutes at a time, but we do that a few times a day. If I remember right, she did not like to be in her stroller that made her sit up in a correct position - but she soon adjusted and now loves to ride in it. I am going to try and start video taping some of her therapy sessions (at least once a month), so that we can see how far she comes along each year. She has a mouth full of teeth and if you dare to stick your finger in her mouth - she will and can bite (she does not like to let go either). Her hair is starting to grow longer and she has lots of curls - I am never sure what exactly to do with her hair because it seems to do what it wants no matter how hard I try to lay it down. O well!!
I will try to get some more pictures on soon. Thanks again for all the prayers and thoughts!

ABR - Need Feedback!

I went to a Parent Training course tonight put on by a couple that has a child with brain injuries. They are with a group called Renewed Hope Foundation and are currently working with a Group called ABR (Advanced Biomechanical Rehabilitation). It has helped their 8 year old son and I think might help Torah in the long run.

Here is the address for the ABR site :

http://www.abrtherapy.com/

If anyone wants to check it out and let me know what you think of it, I could use feed back.
Currently they are based out of Montreal Canada. If you work with ABR you are required to go to the Main site once a year and then one of their other sites (New York, Florida, California, Mexico) 1 to 3 times a year. The Renewed Hope Foundation is trying to get them to set up a site in Casper, Wyoming. All they need is 15 families to say that they would be willing to work with the ABR. The government has even said that if 15+ families sign up - they would be willing to fund some of the expenses that come with working with ABR (traveling, supplies, etc.)
I am going to do my own research - but I think it could help her along with with a lot of other info and helpful tips I picked up tonight. I am going to have my work cut out for me if I do all that they suggest I do to help Torah. I do plan on staying in touch with this couple and seeing how they can help me do more at home to help Torah.
Let me know any thoughts that you might have, I can use any and all support.

Ready for Fall

Well, we have made it though the summer with no medial problems. Still having her sleeping spells, she is even in day 4 of one now. We are increasing her therapy to seeing Bonnie for OT and Pool every week, Chuck for PT twice a month, Janet for OT at home twice a month, and Gail for basic therapy at home every week. I am going to be going to some meetings with other parents and organizations that help kids with multiple diagnosis. I am hoping to meet people to talk to and also more people that can give me information to help Torah as she grows. We went home to Kansas for Labor day weekend and was able to see a lot of our family and friends. I think that Christmas will be our next trip home and we look forward to that. I did measure the kids today and I can not believe how much they have grown. Jace is up to 42 inches and torah is 35 in. The last time that Torah was measured was back in July and she has grown 2 inches since then (talk about a growing spurt).

Good News - but back to scratch!!

We have a new puppy in our family now named Barli. Torah and Barli do not know what to think of each other yet - I am hoping that they will grow to like each other and protect each other.
We have had an EEG done on Torah to check for any new seizure activity and the neurologist have decided that she is not having any kind of new seizures. This was good news, but now we are kind of back to scratch on trying to figure out what is making Torah sick and sleepy all the time. The EEG did say that she is at an increased risk to have seizures - but since she did not have one during the test - the neurologist really can not say that she is having seizures.
About every other weekend she gets hit with something that wipes her out and she will sleep for a few days ( I am starting to call her Lulu when she does this because she is a totally different person - Lulu is what we called here when she was inside me). We have at least one doctor appointment each month from here till the end of the year (some in Casper and some in Denver). One day maybe they will figure out what is actually going on, but until that day - we will keep enjoying her and her happy laughs.
She is really doing a lot better with her head strength and she loves to stand up on her feet (with support). She has had 3 more teeth pop through (giving her a total of 10 now).

Finally an Update

I know that I am a little behind on getting this update onto this blog, but hey, I am finally able to sit down for more than 5 minutes to type it all out. We did make it to Denver last month for all of Torah's check-ups and other appointments. We started with the cardiologist and that appointment was just to make sure that Torah did not have a heart murmur or any other defect. Torah was given a clean bill of a healthy heart and we were told that we should never have to visit another cardiologist again (Good News). Then we went on to see the Rehab specialist (like a physical therapy doctor). She was very nice and did not have anything new for us - so that was a quick visit. The eye doctor was our next stop and I was very impressed with the staff and the resident doctor that saw us. They did not find anything wrong with her eyes, said she was a little far sided and had a small stigmatism - but that normal for small children her age. On Day number 2 - we started off seeing the Neurologist. They were impressed with how far Torah had come since January and said that it is normal to keep children on the anti-seizure medication for up to two years (so Torah will be taking the Keppra until she is at least 3 years old). They also did an x-ray of her spine to use as a baseline. They said that she show a significant dextroscoliotic curvature of the spine and they wanted an x-ray to compare things to down the road. Our last appointment was with our development doctor. We were hoping that she was going to have a syndrome or diagnosis for what Torah's condition is . . . but in all her research, she was not able to connect everything to one specific diagnosis. So as of now all that we can really call it is CNS (central nervous system) disgenisis - meaning abnormal growth of the brain. The doctor was happy with Torah's progress and other than trying to get Torah's constipation under control - we are just proceeding with everything just the same. We will be going back Thursday, July 17th for a EEG to make sure that Torah is not having any further seizure activity and then we will also go back to see the development doctor in September for a follow up appointment.

Other updates about Torah:
Height - 32 inches
Weight - 23 pounds (+/-)
Teeth - 2 (almost 4) on bottom and 5 on top
Able to hold up head pretty good
Likes to stand on her feet
Still has no balance - but is able to sit up with help
Rolls from back to stomach and can pick head up occasionally
The doctor said that she is not ready to be eating by mouth yet - but she does get to taste food

Oh, and we did make it to our new home in Douglas Wyoming. It is a 3 bedroom house - so everyone has there own room and we can still make it possible to keep visitors at the house too. Our next trip back to Kansas might not be till December - but feel free to call or e-mail anytime.

A new doctor to see

Torah decided that she had enough of being well last Saturday and developed a rather harsh cough. No other symptoms stood out to me (fever,vomiting,diarrhea)so I let her go till Wednesday and then took her in to see our primary physician. The doctor thought that it could be do to aspirating since Torah is taking some food by mouth and also because her reflux is slowing coming back. A chest xray was done to make sure Torah was not developing pneumonia due to aspiration, and the test came back normal. After the doctor told me that everything is fine she started to tell me that the radiologist noticed that the area around the heart did not look normal and wanted to know if Torah had ever been diagnosed with a heart murmur. I told the doctor that we had seen a cardiologist before Torah was born and an Echo was done before and after birth, but that the cardiologist could not find anything wrong with the heart at that time. I also told the doctor that about every time we meet a new doctor or whenever Torah is admitted to a hospital - at some point a doctor will ask me if Torah has ever been diagnosed with a heart murmur. After 15 to 20 times of being asked this, I am starting to wonder if there is not something there.
I have talked to Torah's development doctor with The Children's Hospital in Denver and with our primary doctor they both agree that we need to get Torah seen by a cardiologist. So on August 14th I will be taking Torah to a pediatric cardiology clinic in Casper WY to meet with a doctor. I will not know much until then, but as soon as we know more I will update you with what information I get.
Thanks again for all your prayers and thoughts for Torah, she has come along way in the last 16 months.

Summary of the last 15 months

have been trying to come up with an outline of everything that Torah has been though since she was born. This might be a little long - but it will help fill in all the missing gaps that Bob or I seem to leave out when we talk to everyone about what is going on. I think a lot of the time we seem to say that Torah is doing really well and we do not actually say what has happened in the last week. So here is the ups and downs for the last 15 months.

BIRTH - Torah was born on February 4th at 7:11am at Wesley Medical in Wichita, KS. We chose this hospital because we found out during the pregnancy that Torah had enlarged ventricles and could possibly be diagnosed with Hydrocephalus (enlarged fluid filled ventricles in the brain). The Salina hospital did not have a pediatric neurosurgeon on staff and if Torah was born in Salina there was a chance that she would be sent to Wichita or Kansas City anyway. Once my doctor determined that I was in labor, I was then flown to Wichita and taken in to surgery for a C-section. Torah was born 6 weeks early, but still weighed 5 lb 13 oz and was 18.75 in long. The next day a MRI of her brain was done to determine if there was excess fluid in her brain. The doctors said that her ventricles were enlarged but no shunt was needed to drain out any excess fluid. When Torah was 4 days old we received a call from the doctor in charge at night. He told us that Torah's IV was not watched and came unscrewed and she ended up loosing about a third of her blood. They gave her a blood transfusion to replace what was lost and by the time we got to the hospital the next day she was back to normal and doing good. The NICU kept her for about another month to watch her feedings and make sure that her stomach was working properly. We finally made it home on March 6th - but with other problems in the future. About a week after being home, Torah developed a cough and congestion. I took her to the doctor and ER several times but they always sent us home saying that she was fine and it would go away soon. On April 23rd, our doctor finally decided that Torah had pneumonia and admitted her to the hospital for a few days. Torah never did get rid of the congestion.

WYOMING - We moved up to Wyoming around the first of June and I took her to the ER on June 11th - just to make sure that the pneumonia had not come back. The doctor said that it was not pneumonia, but she might have a small ear infection. We met with our new primary doctor in Douglas and also started to see a development doctor in Casper. After meeting with both of these doctors we were then referred on to a Physical Therapist and Occupational Therapist. We also met a Genetics doctor and were referred to a Genetics - Development doctor down at the Childrens Hospital in Denver Colorado. Around September we had another Brain MRI done to check Torah's ventricles and make sure that they were still okay. The MRI ended up showing that Torah was missing some major parts and other parts did not look normal. No other MRI has been done up till now, but one will probably be done before the year is up. The doctors say that if you would do a MRI on a child's brain as they grow - it will always look different because the brain is always changing as we grow.

2008 - A lot has happened this year. on January 4th, Torah got sick again and got dehydrated. She was not admitted overnight to the hospital but was given fluids and sent home with an antibiotic. On January 18th, Torah had a great day and was acting her normal self (she had even had some PT done with a gal that comes out to our house once a week). That night around 10pm I found her on the couch no breathing and not reactive to anything. After finding Bob and we determined that something was wrong we called 911. Luckily an EMT lives around the corner from were we live right now and he was at the house with in minutes. He said that he had not seen anything like what Torah was doing - but it was defiantly a seizure. He was able to get Torah into a position to where she was able to breathe, but she was still not reactive to anything around her. About an hour later we arrived at the hospital in Douglas and was then flown to Denver a few hours later. Torah spent the next 8 days at The Childrens Hospital. The doctors did an EEG and many x-rays. They put Torah's on anti-seizure medication to make sure that she would not have another seizure (she is still on the medication to this day). The doctors also figured out that Torah aspirates when she eats, which is probably the cause to all her congestion from the past year. We are just lucky that she did not have pneumonia the whole time. On January 24th the doctors put a Mickey button into her stomach so that we could feed her and get her the needed calories. We continued with the G-Tube feeds until a swallow study was done in March showing that she could eat some foods without aspirating. After being home for a little over a month, Torah got sick again (due to her brother being such a sharing person). After 4 days of being sick - I took her back to the ER and they found that she had a hole in her bowel. Torah was flown to Denver again for another 9 days (March 4-12)

NOW - After a few more trips to Denver for small appointments and specail equipment which I will write about later. Things are going well. Torah is doing a lot better about holding her head up on her own now, and is starting to roll over onto her stomach. She still can not sit or stand on her own because she has no balance but with our help - she likes to sit up and look around at all the things around her.

Ok, so I have tried to sum up the last 15 months of Torah's life. I know I did not get every detail, but this is the majority of it all. If you ever have any questions - please ask. We go back to Denver in June for more test and hopefully the Doctor that is in charge of her at TCH will have come up with a diagnosis or syndrome for Torah - so that we might know what we have in store for us down the road.

Made it through another month

Okay, so it is not the end of the month yet - but close enough. Torah is doing really well. We just saw her development doctor in Casper on Tuesday. Torah weighs in at 21 lb 3 oz and is still 31 inches long. She is really trying to hold her head up a lot now and when ever you put her on the floor on her back, if you come back later she has rolled over. I think she likes rolling over because she is always trying to get onto her belly. I am currently trying to give her some foods by mouth - but she does not seem to be too interested yet, but I will stick with it and hopefully one day she will realize that she needs to start eating by mouth. We have even started working with a sippy cup since she does not like bottles anymore. Lets just say that between teaching Torah how to eat and also trying to potty train Jace . . . mama is a little stressed out. Bob and I are also in the market for another place to live. Hopefully in the next month or so we will have found something and can start making the arrangements to move (again!).
Myself and the kids will be heading for Kansas the evening of the 18th of June (after we are done with all of Torah's appointments in Denver at The Children's Hospital). We will be in Oklahoma for a couple days but I plan on sticking around for part of the next week (since Bob is working anyway) and that will give me some time to hopefully see everyone.
Thanks again for all your thoughts and prayers for Torah. I appreciate all the comments that have been made, they really help me along sometimes when I need that extra boost.

Growing so fast

We have found out that our insurance approved a specail bath chair and stroller for her. The picture you see is her new bath chair that I have yet to use for an actual bath. It works so much better for a seat for her to sit in and be able to look around (also useful for feeding her now that she can start eating again by mouth). It can bend in about any direction you need it to - and that makes it work well for what we need. I am sure that it will be a bath chair soon enough. We will be taking another trip to Denver in June to get her new stroller that will give her the support she needs. At that time we will also be seeing an Opthamologist, Neurologist, and her Special Care Clinic doctor (all in one day none the less). I am hoping that it will be another productive visit for us and get us closer to figuring out what exactly we are dealing with and how to prepare ourselves for the next year or so.
Torah caught the RSV bug a few weeks back and luckily only got a bad cough from it. Her doctor did admit her the hospital for overnight observation on the 24th of March. She really was not sick at that time, the reason Mom was so concerned is because she was running a high fever for more than two days. When we first saw the doctor - she did not think there was anything really wrong with Torah (possible teething), but after she got the test results back - the doctor was just about as surprised as I was when she discovered the RSV. This was probably the 15th time the RSV test has been done on Torah and it always came up negative - but God must have had a reason. Torah is doing much better now and is much more happy and active then I have ever seen her. She has gotten to the point that she loves to rollover from her back to her stomach and is now trying to figure out how to get form her stomach to her back. I work with her a lot on trying to sit up, she love to sit and she can hold her head up a lot better (not perfect - but better). Torah does not have any balance right now so she is not any closer to sitting by herself - but she still has come along way. She now weighs 20lb 5oz (probably more by now), and is 31 inches long. Her weight is in the 95th percentile of her age group at 14 months (amazing since she was 6 weeks early).

A new and different road

I have been thinking of a different way to get info out to everyone about Torah and what is happening to her. I do alot on my facebook page - but I realize that not everyone is on facebook. So this is my way of trying to include all our friends and family that has internet access. It might take me awhile to get all the information on here, but give me time! Anyone should be able to see this site - so if I miss sending it to someone, feel free to forward it on. Most recently, we took a trip to Denver to a specialist at The Childrens Hospital. Her name is Dr. Ellen Elias and she specializes in development and genetics. She explained alot to us about all the past tests that have been done and as she took all the information about Torah, she said that she has her work cut out for her now that she needs to find out what syndrome or dissorder Torah has. Dr. Elias pulled up Torah's MRI that was done back in September 07' and showed us what was really going on. I am going to try and see if she can send me a picture of the MRI of Torah's brain and also the radiology report (only because alot was said and my brain is not big enough to hold all the information given). The big part that is compicating things right now is her Corpus Callosum. Dr. Elias told us that it is completely missing. After getting on the computer and doing a little bit of research - I found that it is called "agenesis of the corpus callosum".

Here is a site that you can go to to read more about ACC - http://en.wikipedia.org/wiki/Agenesis_of_the_corpus_callosum

The site will go over diagnosis, cause, signs, symptoms, syndomes and conditions, treatment, prognosis, and special cases. There is alot of other things going on in Torah's brian that I need to do more research on - but I will post things as I find them.