Where has the year gone!!

Wow! I can not believe that it is already November!! Thanksgiving is just around the corner and so is Tyler's first birthday and then Christmas after that . . .

I am sorry that I have not been updating the blog much, I feel like life has been a lot of routine things with out a lot of new (so I don't think about updating). I will try to do better here after! :)

Torah standing up!!

Torah has recovered so well from her hip surgery and so many things have changed with her since then. She is starting to get a since of balance and today I noticed for the first time that she was sitting up on her own with only my hand on her back. YAY!!!! She still has a hard time keeping her head up for a long amount of time and I am not sure if that will ever change unless her low muscle tone improves. She also tries to pull herself up off the floor like she wants to sit up, but just does not have the strength to go all the way . . . but she sure tries! She is still not eating anything by mouth or really letting me brush her teeth, but we are going to Denver here in a few weeks to meet with the Oral Feeding clinic and also the dental clinic to see what and if anything can be done to help her.

I still think that she has small seizures almost on a daily basis but they never amount to anything except a build up of saliva. I was watching her while she slept a few nights ago and she just kept swallowing over and over again. She has not had what we call a "reflux" spell (which is probably a seizure) for awhile where she sleeps for 3-4 days . . . which is good news!

We are looking forward to our trip back to Kansas in December at which time we will be also celebrating Ty's 1st birthday (I cant believe my last baby is growing up so fast!!)

Tyler, Torah and Jace on Halloween

Follow up after surgery

Torah has been doing great since we had her surgery. She recovered very well and since she did not have to wear a cast (only a brace for 3 weeks), she has pretty much recovered fully except it will take another 2-4 months for her bones to grow back together. We were told at the follow up appointment, sometime next year we will go back down for an overnight visit so that the doctor can go back in and take the plate and screws out.

Torah's therapist was very happy with the range of motion that she has now and we have begun to do pool therapy once a week in addition to some other PT to help her get some strength back in her legs. I am really hoping that this will help her one day be able to stand up on her own or at least with some support.




We also were able to get her new wheelchair and although it is big for her right now - it is very nice and will hopefully fit her for the next 5+ years.

Hip Surgery . . .

We have made it to day 4 after Torah's hip surgery on the 30th. Today is going to be the most challenging day since she spent the weekend hooked up to pain meds with an epidural and they shut that off this morning at 6. When I left her room she was exhausted from crying and trying to take a nap in spite of the pain. We have the option of going home today if she can tolerate the pain with only the meds given through her g-tube . . . but I'm not sure how she is going to do yet.

Going back to the surgery . . . We checked in around 9 and her surgery was going to be at 11:30, but Dr. C was running behind and Torah did not actually go back for surgery until 1:40. Once they got her into the operating room, the Anesthesiologist had a hard time starting an IV and ended up just putting in a central line in her neck. I think he had a hard time with her epidural too because he had to redo it after Dr. C was done with her hips. The surgery it self went very well! They were concerned a little bit with how much blood she was loosing, but did not give her a blood transfusion during the surgery. I think I was allowed back into the recovery room around 6:30 and we did not get her up to the floor until almost 8pm.

Day two started off ruff. She was so pale and really not responsive to much. After taking a blood sample they found her levels very low and ended up giving her 2 pints of blood that morning which helped her so much. She woke up and started being herself and she started to pee so much that her catheter could not keep up with her output and she filled the diaper and her sheets.
Day three was really not too eventful and not much different - so we were able to get some rest and prepare for today . . .

Thanks so much for all the prayers for her and me. It is never easy and I wish she did not have to go through all of this - but I am really hoping that it helps her so much down the road.

Torah's Haircut and upcoming surgery

Here are some pictures of Torah's new hair cut! I was really debating about cutting any off, but when Jace drove one of his monster trucks into her and it got caught in her hair . . . well, that just made the decision for me! This is really her second haircut, but her last one was just a trim and I did this one by myself . . . good thing her hair is curly (or you would be able to see all the chopping i did).


Now for her upcoming surgery! We will be heading down to TCH on the 29th to check in on the 30th for her surgery at 11:30. The procedure is called a Varus Derotational Osteotomy and if you look at my previous entries - there should be a x-ray of one done on a dog (it was all I could find). I am down deep praying that this will help her stand up (with assistance) so that she will not always be wheelchair dependent, but only the Lord knows what is in store for Torah down the road. I will try and get on while at the hospital and post an update on her status after the surgery. Not sure therapy wise what will happen, probably a lot of pool therapy. She will not be in a cast (or so they told me) and we are hoping to have her new wheelchair by the time we get home. Bob's parents will be watching the boys for me while Bob is at work. They have rented a house in Denver to stay at so that I can be close and also get a break from the hospital too if I need it. Praying that nothing else comes up so that we do not have to stay longer than what they told us.

Sleep Study and Other decisions to make

Well, not sure exactly what happened with Torah's Sleep Study last Thursday but here is what I do know. We got to TCH to check in around 1pm to have her admitted (so that insurance would pay for everything), and even though our Doctor herself called 'bed placement' to reserve a bed - no bed was reserved and of course the hospital was packed that day. Around 4 pm they finally got us up to the floor and into a room where we waited till 8:30 when we were taken down to the 'sleep lab' for the night. Torah tolerated them hooking her up for the sleep study and also she had an EEG done as well, so they had to hook all the little probes up to her head to monitor her brain (they wanted to know if she was having seizures while she slept). The shut the lights off at 9:30 and for the next two hours . . . Torah screamed and cried (I felt bad for the little boy next door who was having his study done at the same time). I crashed and slept like a rock and come 6 AM they were waking me up and un-hooking Torah. The gal that monitored Torah all night said that she did destat down to 63 % and they did have to put her on oxygen just to keep her above 88 %.
I thought that we were going to get to go home Friday afternoon, but the doctors were just not happy with what had happened and wanted to figure out why or what was causing her oxygen levels to drop so much. So, Friday night and Saturday night they put her on 0.5 liters of oxygen and watched to see if she would drop. We also met with the ENT doctors and a pulmonologist to see if they could come up with a diagnosis or a solution to the problem. The ENT doctors thought maybe it was her tonsils - and even after sticking one of their cameras down her nose to see if they could find anything - all they could come up with was her tonsils were bigger than they should be, but they do not think that they were the problem and so they did not want to go in a remove them just yet. The Pulmonologist listen to me talk about all the 'asthma' related issues that Torah has dealt with since birth and did not diagnosis her with asthma but said that she defiantly has asthmatic related issues . . . so he prescribe an inhaler for her and I am hoping that it will help break up the stuff in her throat and also keep her from wheezing at night. I have not heard the official results from the doctors about the Sleep study or the EEG . . . will try and post when I do hear!

Sunday morning before we left, Torah had a type of 'swallow study' done to see if she was refluxing and if her nissen had come undone (was done back in Jan 08') - it is where they take part of the stomach and wrap it around her esophagus to tighten it up and keep her food from coming up if she does reflux (or throw it up) and all that is to keep her from aspirating any food into her lungs and getting pneumonia. According to what the radiologist told me - her nissen has loosen and is not doing what it was intended for so we were referred onto the surgeon that put her g-tube and nissen in.
Now comes our BIG decision:
The Surgeon called me this morning to give me our options. He still wants to see Torah before making a finally decision, but here are our 3 options (all 3 have good and bad):
Option 1: Do Nothing! Good part is maybe her reflux will go away (he told me that she only had the reflux because when they tighten the esophagus it keeps air and gases from getting out - otherwise know as burping). The bad part would be the reflux stayed around (like it still currently is) and she retches - making food come up into her throat - and then she aspirates it into her lungs, gets pneumonia and gets hospitalized.
Option 2: Revise the Nissen - all the surgeon would do would go back in through her belly button and laparoscopically redo the nissen. Good part is really not much except giving us more time to figure out if we want or do not want to do Option 3. Bad part - she keeps struggling with reflux like she is right now and maybe in a two plus years we are right back at we are right now.
Option 3: Bypass the stomach. He tried explaining it to me over the phone telling me that it would make so much more since if I saw a drawing . . . but here is pretty much what he told me: They would go in and disconnect her stomach from her esophagus and attach her small intestine to her esophagus. To me it sounds like one of the 'stomach by-pass' surgeries that they do to help overweight people. Good part would be that she would never struggle with reflux ever again. Bad part is it is very permanent and we could never go back - this part is bad if one day Torah decides to finally eat food through her mouth. The doctor told me that she could have some fluid and a little food, but she would never be able to eat the calories that she needs and would have to be supplemented by the g-tube. I wonder about the g-tube though too since it feeds her directly into her stomach right now . . . what would they do if we did choose Option 3??

I have a lot of questions right now and I know I need to do my homework plus talk to as many people as possible before making this decision. We can schedule an appointment pretty much any time to meet with the surgeon and then he would go from there with whatever we decide. This is really when I wish we had a "Owners manual" to help us figure out the right choice with her or even to tell us what she might be like in 5-10 years from now . . . but since we don't I will turn to God once again and hope that he will help Bob and I make the right choice.

Sleep Study at TCH

Tomorrow morning I will be dropping the boys off with a friend to watch and then taking off for Denver to admit Torah as an inpatient so that she can have a Sleep Study done with an EEG. I wish that while we were in KC at Childrens Mercy - they would have just done all of this, but for some reason it was not done and so we will be making yet another trip to Denver. I am not going to be able to meet up with her regular doctors on this "short notice" trip, but we are meeting with an understudy and he will get all the info to our normal doctor. They are doing the EEG to see if she is having any seizures while she sleeps and maybe that is what is causing her to destat while she sleeps. I do not what her to have a seizure, I also want the doctors to actually catch her having one when she does have an EEG done . . . it is all in God's hands what happens.
I did get her Special Care doctor to finally order us some oxygen to have at home in case she has a seizure. I am hoping that after this sleep study, the doctors will order her to be on the oxygen at night too. When ever she is an inpatient - when she sleeps - she will destat into the 80's and even sometimes into the 70's. I am just surprised that no doctor has ordered it for her before now.
I will post an update as soon as I hear the results. I am hoping that this is just an overnight visit and they don't find any reason to keep her longer than that.

In the next few weeks and up coming months, Torah has her first dentist appointment (which she will be fully sedated for) and also her surgery on her hips. I will also be complicating things - on June 2nd, I will be having the rod in my right tibia taken out (they actually wanted to do this on this upcoming friday, but I had to respectfully decline). Not sure of the recovery time, but the doctor did inform me that I will be sore for awhile . . . Oh, I cant wait!!! LOL

Things are looking better

The doctors extibated her and took away all breathing support since Torah was about to do it for them anyway. She did fine for about 15 min before she kept having apnea spells. After going out to eat and coming back - the doctors had decided to put her on a CPAP machine to help her get past the apnea spells . . . sad to say that it did not help much. Plus every time she yawned or coughed she would loose the seal around the mask and the machine would beep at us (constantly!). Bob and I talked to the resident and tried to tell him that we thought she was having small seizures (staring spells - plus her eyes were so dilated and did not respond fast), but he did not seem to think that seizures were the cause. Sometime around midnight the doctors did rounds and the head doctor checked her out while she had one of these spells that cause the apnea and decided to put her on a seizure medication to help stop them (if they were seizures) . . . sure enough the medication helped but only after her blood pressure dropped to 80 over 30. She did bounce back and had a pretty restful night. After shift change this morning - our nurse Amanda that we had yesterday too - was tired of Torah trying to take her CPAP mask off and had the Respiratory Therapist come in and disconnect her from the machine. She has done good since then with only a few time of her holding her breath and destating down in to the 80's.

Sounds like the Neurologist are going to come talk to us this morning and then get Torah moved up to their floor and out of the PICU maybe around noon today. Just praying that the doctors can keep an open mind and maybe help us with all of this new information. Thanks so much for all of the prayers . . .