Spoke to soon!

Well, I think I spoke to soon about Torah's reflux not acting up. It is back and in full swing again, but I am guessing that it is because of her sinusitis. So we are back to feeding her as slow as I can and she is pretty much on a slow drip all day. This is the time that I am glad that we have a suction machine here in the house, because I pretty much am suctioning her out about every hour if not more. She has been sleeping a lot and is not her normal happy self right now. I am just waiting for the weekend and hoping that she does not get any worse than she is. I think that if she is still struggling next week, I will probably call her new PCP and see if we can not get into see him (even though we have not seen him yet).
We are also going to be seeing a dentist in Casper (for Bob first), but I am going to talk to him about Torah and weather or not we should get her into see a special pediatric dentist or just wait a few years.
Oh, and one more note! I talked to the gentleman from U of WY Disability Determination over the phone yesterday. He was going to come up from Laramie to interview us and Torah's OT - but with all the snow that we received - the interstate was shut down and he was not able to drive up. He said that we would receive a letter in the mail in a few weeks stating that we are on the waiting list for the medical waiver. As soon as the government approves the list of people - then we would be approved and would then be able to get Medicaid for Torah and also a lump sum of money to help with bills or equipment that we would need for her. I am already looking at a medical bed/crib like what the hospitals use so that she can be inclined at night and that might help with her reflux. I found a bed that can be used for that and has side rails to keep kids in - but not sure on a price; so we will cross that bridge when we get there.

Sick once again!

Well, I knew it was too good to be true. Torah is having problems with a sinus infection again and her cough (that went away for a few days) is now back and is even stronger and worse than before. She has pretty much slept all day and I hope will sleep tonight as well. Thankfully her reflux is not acting up right now. I hope and pray that she can fight this one away on her own and that we do not have to take her to the ER. We have yet to have our first visit with our new PCP for her and so I would probably not be calling him for this go around unless it takes a turn for the worse.

On a side note - some one from the University of Wyoming's Disability Determination department will be coming to the house tomorrow (29th) to interview me and check out Torah to verify all the information from the psychologist report so that we can get onto the waiting list for Wyoming's medical waiver program. I am guessing that it could still be another year (after being put onto the waiting list) before we receive anything, but the guy told me that it is up to the government (go figure!!)

Back from TCH

We made it to Denver and then back home again safely. The roads were not great (snow and ICE) and we saw several wrecks along the way, but that just helped remind me that I needed to take my time and drive as safe as I could. I did have a semi-truck pass me where the snow was really loose, and after he got around me I had to slow down and almost stop because it was a complete white out. Thank goodness that he was the only one!!!

Torah had an Upper GI done and the test went well. They saw that she did reflux up into her esophagus (past the fundo nissen), so we are just going to keep an eye on things and next time she struggles with the reflux - then mom will call the GI doctor and will see what he wants to change then.

 We also met with the Special Care doctor and we pretty much went over everything that has happened over the past year. She pulled up the MRI done last month and showed me the pictures. She told me that Torah's brain (white matter) has not grown or developed much over the past year and since there is no such thing as "empty space" in the brain, Torah's ventricles have grown and filled in the areas. If you were to look at the MRI picture - her ventricles are taking up most of the brain. Dr. E told me that a normal person's ventricles would be 1/3 the size of Torah's. Dr. E also told me that Torah's scoliosis is at a 27 degree curve and that it is not serious - but for her age and size, it would be good to get her into see a Orthopedic doctor next time we come down. So come April (which will be the time for all our routine visits) we will be seeing 7 different doctors (or clinics) over a two day period: Special Care, Rehab, Neurology, GI, Orthopedic, Optometrist, and maybe a Orthodontist. 

Hopefully Bob will be able to come with us and help out (it always makes it less stressful on me when he is there). 

Doing better Today

Torah had a better day yesterday and so far today is doing great. Reflux has calmed down and I am able to up her feeds from 30-40 ml/hr to 60-70 ml/hr. I will still be interested in what the GI doctors have to say about why the reflux keeps acting up. They talked about putting her on a medication to help her stomach empty faster, not sure weather or not they will.
She has her OT and Pool therapy today, last week was a little rough and she did not want to work. I hope that she has fun with Bonnie today and wants to work, because Bonnie can do so much more with her when she cooperates.

Upcoming visit to TCH

Well, I was trying to schedule with the GI doctors and the Special Care doctors - a visit maybe sometime in mid February for us to take Torah back down for some follow-up care. I guess that the GI clinic was not happy with that and really do want us back down there "1 month" after being dismissed from her last inpatient stay at TCH. So, we will be heading back to TCH next friday (the 23rd).
Dr. B (one of the GI docs that we saw last month) called me today to talk about Torah's reflux and what has been going on since we last talked with him. I told him that her reflux has not improved since we have been home, and she is 'healthy' and should be not having problmes with her reflux (ecpescially since she is on 30 mg of prevacid daily). Sometimes I wonder if it could be the food that we are giving her since it is the only food that she has ever been on after the g-tube and fundo were done last January; but Dr. B wants to do a radiology study to check out the fundo to make sure that it is still holding first. I know that they are going to put barium into her stomach via her g-tube and see if she 'refluxes' it back up into her esophagus (sad to think that I am actually hoping that she is still having bad reflux that day).
Her reflux is just almost an everyday thing anymore - but it is still hard to watch her struggle with it so much. She is such a little trooper and always pulls through. Even right now as I am writing all this - she is struggling with the reflux. I just hope that they can figure out a way to get her past this part of her journey so that she can move on and get stronger and healthier.
So on Friday the 23rd - I will pack up myself and the kids and head back south for another adventure at TCH. Prayers are always welcome!!

New Chair

Torah's therapist brought by a chair for her to use here at the house. It was not what I had posted earlier - but it gets Torah sitting up. Just like the standing unit - Torah did not like it the first time, but she has adjusted and seems to like it. She needs a lot more side (trunk) support, so I am not sure if it will help her so much now, but we will keep using it and see if she does not strengthen up.
Torah seems to be over her sinus infection. She is still having problmes with her reflux and seems to be sleeping a lot lately - but that could just be her bodies way of recouping. I am trying to set up some appointments at TCH in Denver for her to see the GI doctors for a follow-up (I will also be asking them about her reflux issues), and then we will get in to see her Special Care doctor as well. I am also going to be looking into getting Torah to see a dentist or orthodontist soon. Even though she does not eat through her mouth - her teeth are turning yellow and her gums are pretty red. Not sure when we will get it all checked out - but hopefully soon. Maybe part of her problem with things in her mouth is because her mouth hurts . . . who knows!!

Well, that is about all I have to update for now. This mama is pretty tired and is going to try to get everyone to bed early tonight (I did not say that it would happen - I just said that I would TRY!)

Untamed Spirits!!

Great NEWS!!
Torah has been chosen by the Untamed Spirits Motorcycle Club to be their next sponsor child for the year 2009. They have been doing this for 7 years and Torah will be the 8th child with special needs that they have helped with their POKER RUN!
I will update often about what is going on with Torah and the Untamed Spirits. We are looking for a lot of help to have a HUGE and SUCCESSFUL year.
Donations are needed for the raffle (so expect to be buying some tickets to win the raffle prizes). Cash donations are welcome as well. The poker run is scheduled for June. You do not have to ride a motorcycle to join the poker run, families and friends often take the ride in their car and then join the group for the raffle and picnic in the park.
More information will follow soon!

You can send donations to:

Untamed Spirits Motorcycle Club
PO Box 34
Douglas, WY 82633

Untamed Spirits Website

Thank you and much help is needed so spread the word and we look forward to hearing from many friends and family!!

Oh, and I talked to the leader of the club last night here at the house and he said that Torah is a life long member now. They are even going to try and find her a vest just for her . . . how AWESOME!!

Results from our trip to The Childrens Hospital

First are the pictures from Torah's EGD
"Esophagogastrodudenoscopy"
scope that was done on the 21st of December.

These first 3 pictures are the Duodenum (upper intestine)
If you look at the 2nd and 3rd pictures - there is a white spot,
that is the healing ulcer that we suspect has been bleeding for the last 4-6 months.
All of the dark spots are the left over blood that was not flushed out of her stomach when we arrived at the ER at TCH (it took a full liter just to get the fluid to run mostly clear)

These three pictures show part of her stomach which looked normal and healthy.
The 3rd picture is the inside of the Mic-key button that we feed her through - it is just a ballon full of water.

So, pretty much they did find the ulcer that was healing - but they had no luck finding anything that would have caused her to bleed so much on the 17th to make her anemic and have to get 2 pints of blood. The doctors told me that she was probalby just bleeding real slow from the ulcer for the past few months and then whatever caused her to bleed after her MRI pushed her over the edge. We are suppose to go back in a month for a follow-up with the GI clinic at TCH. Other than that - now I just know what to look for and if I ever find the dark brown "coffee ground" substance in her stomach again - I will know that it means blood and that we need to go back to see if she has more ulcers.

Out of all that drama, I did get a copy of Torah's MRI report from the ER doctor. The Radiologist still could not find the Corpus callosum (this is part of the brain that does not ever grow after birth - so she will never have it). They did note a increase in ventriculomegaly with associated periventricular white matter loss.
TRANSLATION:
My guess is that the four ventricals in Torah's brain that have been enlarged (ventriculomegaly) since before birth have grown in size and is making the "white matter" smaller. I have not talked to a doctor to get their translation on this and if any one knows better - feel free to correct me.

Other areas that they reported on her MRI:
~ Pituitary gland is "unremarkable"
~ Optic nerves appear symmetric and within normal limits
~ Left cerebellar hemisphere remains slightly smaller in size compared to the right

Other than all the above - all her test and appointments went well. If you have any questions, feel free to ask. Thanks again for all the prayers and support for Torah.

New Picture links

Here are some new picture links to my facebook account that everyone should be able to see. 

Torah's stay at The Childrens Hospital in Colorado

Christmas pictures from the Nowak and Woods families

Christmas with Dad

Aunt Chrissy took a lot of other picts and I will try and get them posted as well

ENJOY!!!

I will soon post an update of all of Torah's test done back on December 16 & 17 and also the scope that the GI doctors did on December 21.

Back in Wyoming!!

Well, it is a new year and Torah is almost 2 years old. I can not believe how fast this last year few by. I am trying not to think about all the things that I have to do just this month for Torah. We missed our last appointment with our favorite doctor that has left Wyoming to go to another state, so I am going to be on the phone with hopefully our new doctor in Casper seeing when we need to schedule our first visit with them. Torah also has not had much therapy done in the last few weeks and we are needed to start that back up and get her moving again. Have not heard anything about the seat that the therapist were trying to find for her - but that will come in time. I also am needing to schedule a follow up appointment with the GI doctors down at TCH sometime this month (or maybe February). We just started a new insurance for our prescriptions and so far it has proven to be better than our last - time will tell, but at least they are covering her reflux medication with no questions asked.
Torah still has a pretty bad cough and also a nose that will not quit blowing bubbles. She has learned that she can take her right arm and wipe the snot all over her face - so mom has been trying to stay on top of it (yeah right!) I think the antibiotic that she is on has cleared up the infection - but now we just need to get rid of the rest.

Thanks again for all the prayers and support that went out for myself and all of my family during the last few weeks. My sister and I both left today to go back to our homes (miles away from dad) so now my worry starts for my dad. I am sure that we will be back soon to check in on things and he is always so happy to see us!