"Knock on wood!"

"Knock on wood" has been a phrase I have repeated many times in the past few weeks every time someone asked me how Torah was doing. I was so afraid that I was going to jinx her. Not sure if I did, or maybe it was just the fact that she was doing so well for so long. Thursday she did fine all day except that she slept about 18 hours out of the day. Friday is another story though - she woke up fine and with in an hour was having bad reflux and vomiting more than normal (luckily no signs of any blood), she slept for about 20+ hours. Now it is Saturday night and although she has slept pretty much all day, I have been able to up her feeds and give her more fluids with out causing her reflux to kick in. I am hoping that tomorrow (Sunday) goes better and not worse, but unless something drastic happens we will just rest here at home and try to get her back to normal. We do go to TCH in a month and I will be interested to see what the GI doctor says.

I have misplaced my camera - so there will be a shortage of pictures until I can replace it or maybe even hopfully find it. Jace is doing good, still growing like a weed. I was hoping that the jeans that we bought him this last winter would fit him again next winter - but he is already growing out of them. Thankfully it is only his legs that are growing and not his waist - so all his shorts still fit from last summer. My pregnancy is going well, I am 9 weeks into it and the 'morning sickness' is in full swing (only I would call it 'all day sickness'). The house is not as clean and I dream of getting out of the house, but the moment I get into a vehicle it is like instant car sickness (so I try to avoid that as much as possible). It was pretty bad today - I was reading a report that was done by Wyoming Dept of Education for Torah from the Head Start Clinic that we took her too last month and half way though I felt like I was in a car reading (in other words - I was getting "car sick" on the couch). Only a month more of this and then I will be in my 2nd trimester - I can only hope it goes by quick!!

Not much going on in May for Torah or the rest of the family. June will be busy for us though. I take Torah to see her ENT on the 3rd and talk about what we do about her ears and adnoids. My sister moves back to Kansas from Flordia after her classes are done on the 5th. Then on the 10th and 11th we will be in Denver at TCH. 13th is the Poker Run in Douglas, WY done by the Untamed Spirits Motorcycle Club (we are hoping for a great turnout). Heading to Kansas on the 18th for my cousin Michael's wedding in Topeka on the 19th and then a Family Reunion with Bob's family on the 20th and back to Wyoming on the 21st for Bob to go back to work on the 22nd (no rest for him) . . . nothing yet for the last weekend of June - but things do like to come up!

I wish every mother out there a HAPPY MOTHERS DAY!!
(I love you mom and miss you so much!!!)

Doctor Visits and stomach bleeding

As I mentioned in the previous post - I had thought that I saw some blood in her stomach contents before we left for our trip to Kansas over Easter weekend. I think that I was right because on Tuesday the 21st I saw it again and it was quite a bit (not fresh blood - but the "coffee ground" looking contents). I had hooked her g-tube up to vent her stomach (it is how we burp her - or get the air out of her stomach) and after quite a bit of air came out, all the water I had just given her was coming back up along with the "coffee grounds". So I got on the phone to call Torah's GI doctor at TCH to see what he wanted to do. He had told me to call him directly and not any other doctor - so assume my surprise when the nurse told me that we needed to call Torah's PCP and get her in to see him first. It is hard enough to get into see them and I was starting to get very frusterated. Thankfully, God was not wanting me to stress too much about all this - and the doctor's office told me that they could get her in the next morning. We already had a visit that morning to see Torah's ENT doctor and so her PCP doctor got her in 2 hours after (worked out really well). Wednesday morning we took off for Casper and the visit with the ENT doctor went well. They looked at her ears and agreed that she is not hearing out of her Left ear because it has filled back up with fluid, but her Right ear is fine and the tube is helping keep that ear clear. The doctor does not want Torah on any more antibiotics unless needed (so no 1 month of augmentin to help with the recurring sinus infections). The ENT doctor thinks that they might be taking her adnoids out the same time that they put tubes back in her ears. We go back in June for the doctor to make his final descision. After our ENT appt we went over to see her PCP and he also agreed about her not getting the antibiotics unless really needed. He thinks that the bleeding might be just be a come and go thing (which very possibly could be true). He ordered a blood test and I am guessing that no news is good news. So anytime I see the "coffee grounds" in her stomach contents I will call Torah's PCP and see if he wants to order another blood test.

She has been doing great the past week and has been really happy ( I love it when she is happy)!! Not much else is new. We are still working with our insurance company on the pool therapy, and I am still waiting to hear our final appointment times for when we take her back to TCH in June. The only appointments in May are for Bob and I, so hopfully Torah stays healthy and my stress level can come down before June.

So much good - but so much stress!

We made it back to Kansas to surprise my sister for Easter weekend. She thought that the kids and I might make it to dad's house so that she could see us when her and dad got back from Kansas City, but we ended up going with dad to KC to pick her up at the airport . . . and she was surprised!!! It was a good trip and visit with family. We got to see my dad's sister Marilyn in KC and spend some time with her and Curt & Karla (friends of the family)on Friday and Saturday. Then when we got back to Salina Saturday night - we took my mom's mother Lois out for her 82nd birthday and my mom's brother Rod and his son Ryan were there too - so that was a great night also with family. Now for Easter Sunday - Dad, Chrissy, myself and the kids all went to church in Abilene at ABBC and then took off for White City to spend time with dad's family. So our small trip was a good choice to make since we were able to see and spend so much time with our family. The kids and I also got to see and spend time with Bob's parents and also Great Grandma Carlene on Thursday and then again on Monday. Let's just say that there was not much resting on this trip!!! :)

Torah tried to give me a scare before we left on our trip and I am not sure if I saw what I reall saw - but we are going to wait a while before I jump on the phone to call the doctor yet. She was having problems with reflux again and was spitting up during the night. When I went in to get her up Thursday morning - I noticed some dark brown stuff on her blanket. I tried to get some of her stomach content out through her g-tube but was not too successful. It looked like she might have another ulcer and might be bleeding again (dark coffee grounds), but I have not seen any sign of it since - so we will wait. Funny thing is - is that she was suppose to meet with the GI doctor in Denver at TCH on Friday and it got canclled because it was scheduled with the wrong doctor. Not sure if that was God's hand in it or not.

We are in the process of getting more appointments scheduled for her at TCH for sometime in June, but are waiting for the final word on when they will be. We also have scheduled this week an appointment for her to see a Audiologist to see if we need to get a tube put back into her left ear so that she can hear again.

We do have some good news for Torah! She was approved to get Respite care. She will be watched by a special provider that is approved by the state and we only have to pay a small price (the state pays the rest of the money to the caregiver). So far she has been approved for 40 hours this month and also May, then in June we will have 60 hours. I need to call a couple of people to see who is avalible to take Torah on (since there is only 2 active in our town). Still no word on the the Waiver, but Torah is on the waiting list and we can just pray that it gets approve soon.

We will probably be looking to purchase a new form of transportation this year. We had been talking about and looking at mini-vans that could help Torah better. It is getting very difficult to get Torah in and out of my SUV (I pretty much hit her head on the door frame every time I get her in and out of the car). Something else has changed our situation though and is going to make us get a different vehicle before December . . . we are now expecting baby number 3. We are happy and really excited about this!! Bob wants another boy, I want another girl and anytime you ask Jace what he wants - "I want a sister!". So I guess we will wait and see what God has planned for this next one.

God is good and has been wonderful to us - so just keep us and Torah in your prayers and thoughts!!!

PS - Don't forget about the Poker-Run in June!!

Torah's Vest

Terry from Untamed Spirits dropped off Torah's vest the other night and gave her her first pin. It fits great and will be a treasured item for her. I am really hoping that the turn out will be great and that the group can raise a lot of money for us to use for Torah. I am already coming up with some medical equipment that we can use it for (that insurance will not pay for). So remember, if you would like to help out - contact the Untamed Spirits. I also have raffle tickets and you can email me at kelle.hull@gmail.com

Too much to worry about - but we are making it through it all some how!

I am sitting here tonight watching Torah sleep. She has been such a trooper lately and has been so happy through it all. As far as I know - she got her first ear infection on Sunday and we are on day 5 with no end in sight yet. I have never seen so much stuff come out of a ear before let alone different stuff everyday (lol). I only had to give her Tylenol one night - so it does not seem to bother her any and she even laughs at me when I try to clean her ear out. Who knew?? Another funny part about it all is that Monday morning we were in a blizzard warning and were in no way shape or form going to get to Casper to see her doctor. I called them on the phone and let them know what was going on - a few hours later, my phone rang and the doctor called in a RX to our pharmacy (no questions asked). Then you hear on the TV " This is the Douglas Police Department - we are asking that there be NO unnecessary travel out on the city streets". Luckily I have 4 wheel drive and made it to the store and back home safely (but you could not see more than a block because of all the blowing snow).
Terry with Untamed Spirits came by the house last night to drop off the raffle tickets for the benefit that they are doing for Torah. If you would a ticket ( $1 = 1 ticket / $5 = 6 tickets) email me at kelle.hull@gmail.com - The poker run will be June 13th.
Upcoming for Torah in the next few weeks are a couple of appointments. We are going to be heading to Lander, WY to meet with the Wyoming First Step Diagnostic Clinic. While we are there, she will see the Wyoming Educational intervention Assessment Team consisting of a Vision specialist, Physical Therapist, Speech Therapist, Occupational Therapist, and a Hearing Impaired Specialist. Then later we will also see a Audiologist, Pediatrician and a Low Vision Specialist. So it will be a full day of doctors and specialist (just like Denver). The week after the appointment in Lander I (as of now) I will be heading back to TCH in Denver to see a few doctors. I am trying to get it pushed off for another month so that we can hopefully try and get all of her doctors in in the two days that we plan to be there. If we go in a few weeks - we will only be seeing 3 out of 6 and we would not plan on being back till the fall for our regular visits. So once I get a hold of our SCC gal that sets up all our appointments - we will see what can be done.

Wishing for wammer weather!!

It is March (actually March is almost over already) and we made it to Missouri, Kansas and back to Wyoming safe and sound. Although we did pick up some cold bugs and Bob got his had bit by his brother's dog. Funny how a guy can go slaughter a deer (or other wild game) but the sight of his own blood makes him almost pass out (I had to laugh at him for that one).
We met with Torah's new PCP before our trip. It was just a well child visit with some lab work (that must have been normal since I did not get a call back from the office). We also saw her ENT doctor to see how the tubes in her ears are doing. The tube in the left ear had finally slipped out and the doctor said that the right one would come out any day. He also told me that it looked like the left ear was filling back up with fluid. I told him about all her sinus infections this year alone and he wants to wait till warmer weather (June) before making any big decisions.
We go to Lander, Wyoming on the 3rd of April to meet with a group of specialist that have clinics to see kids like Torah. It is all being paid for by the State. I just hope that it will be beneficial and that we can learn something new or maybe they might have some new ideas on how to help her.
BAD NEWS: I just got a letter from our medical insurance telling us that Torah's pool therapy will no longer be covered because they see it as maintenance. So, until I get that straitened out - no more swimming for Torah unless I can come up with the 65 bucks for each visit. Oh, and they are not paying for the past few months either - so that is another 600 dollars to pay out as well. I have a feeling that I am going to be sitting on the phone with our insurance company to see how we can get at least the past visits paid for. We had such good luck with our insurance when we first started - and now it is just going down hill fast. I am hoping that their is one person that I can deal with - but you never know with stuff like this.
Torah is growing and trying her hardest to keep up with her brother Jace. She is about 37.5 inches long and is 32 pounds. I am getting to where I can not pick her up very well when she is on the floor - but I am not sure how to resolve that issue either. At some point everyday I need to pick her up at least 5-10 times (if not more). I guess I should make me a monthly visit to see a chiropractor (yeah right - insurance would love that too).
Not too much else to report for now . . . check back soon!!

Sick once again!!

Torah has managed to get yet another sinus infection. This one was a bit different from the other three she has had in the last 3 months. Her right eye (or the skin around the eye) started to turn red and it started to leak the yellow stuff and would dry up so fast that her eye would be glued shut at least twice a day. Then the day that Bob and I left to go on a 2 day outing for our 4th wedding anniversary (with out the kids) - Torah deceied that a few hours after we left would be a good time to have her nose start running and it was green (or so I was told). Our friend Robin watched Jace and Torah for us and I do not think she got much sleep that night due to Torah's snotty nose or her reflux acting back up. We are on day 4 and she seems to be getting better - but her nose is still running and reflux is still an issue. We finally have an appointment to go see her new PCP and then the day after we see him we will go back to Casper to see her ENT and I have questions for both of them about trying to figure out why she has had a bad cough for 3+ months and also why it seems that about every other week she seems to get a sinus infection. I know that winter months are hard on little ones and she always has something come up - but I do not need anything keeping Torah sick and then lowering her immune system and opening her up to even more. We have a trip coming up next month and the last thing we need is for her to end up back in Denver at TCH for a week or two. So just pray that she can get better and stay better till spring comes.