Hot Air Balloon

Remember how Josiah bought us a Hot Air Balloon ride for my 25th birthday, but it was canceled due to weather? Well we got to finally go on the ride last night! It was awesome! I started getting nervous as we were driving there, then I was fine, then I got nervous as it lifted off... but it was totally awesome!!!

Here we are meeting up with the group...
They said they used to do all the work, but people always wanted to help so now they let people help set everything up and take it down.

It was HUGE but this is not a "big" balloon they said! We almost didn't get to do it since it was still pretty windy but at the last moment they decided to go for it! He said the balloon is 50K but since the owner wanted pictures of flowers and her dog on it it was 65K. Wow!

The fire was so hot right above our heads. It was cool jumping into the basket then lifting so gracefully off the land.

Look at the view! Awesome!!

Thank you Josiah - this was a wonderful birthday present and I will never forget it!

The sun setting in the distance.

We actually hit trees with the bottom of the basket to slow down then only had 2 bounces as the basket landed. It wasn't bad at all. Then the men jumped out and moved the basket into the field a little more. We happened to land in a field that wasn't privately owned. Some men saw us hitting the trees and thought there was trouble so they ran over, but it was just how you slow down a giant balloon filled with air and a basket full of people I guess!

All I can say is totally awesome and I would love to do it again sometime! Thank you Husby!!

Compared to Daddy

Mom K pulled out her notes from when Josiah was little. She has a lot of them but I am pulling a few things to put in here.

Daddy at 5 months compared to Truett at 4 months:
Daddy: "His hair falling out a lot now in his bath water and when he lies down."
Truett: His hair has fallen out in a line around his head.

Daddy: "He has rolled over a couple of times but is not real good at that yet."
Truett: Rolls all the time now. He made a giant circle around our floor yesterday as he rolled from back to belly to back to belly, etc.

Daddy: "He can sit up with support."
Truett: He is not sitting up at all yet.

Daddy at 3 years compared to JayDonn at 3.25 years:

Daddy: "Josiah has some pretend cats, dogs, birds and a boy he calls his brother Tommy."
JayDonn: Jay had a pretend friend, I can't remember his name. but his friend was around almost a year ago. He was green and had wings, and only came out when the neighbors were making loud noises.

Daddy: "Can make Ezra laugh a lot by pulling on him or half sitting on him but sometimes gets too rough."
JayDonn: All I can say is DITTO! Jay does the same thing to Truett. And he laughs but then Jay will get rough and I have to step in to keep everyone happy.

Daddy: "Usually gets 1-2 reminders a day - often for disobedience and talking sassy."
JayDonn: Well pretty much the same thing! Disobedience and talking sassy are his biggest problems.

Daddy: "Loves to chew gum."
JayDonn: Everyday he asks me if he can have more of Grandma's gum, or anyone else who ever had gum that he knows of. He almost always spits it in the trash rather than swallowing it.

Daddy: "Likes to make up words."
JayDonn: molly-golly-sholly-folly-crawly, etc He rhymes words and totally makes them up. It is so funny!

Daddy: "Shows an independent spirit and often needs rebukes for talking sassy."
JayDonn: I don't think I have ever met a more independent child than Jay. He has told me not to come get him from class, that he "can do it" about everything!!, he has tried to ride his bike by himself to walmart to buy a fish, etc.

Daddy: "Likes to talk."
JayDonn: From the moment he wakes till the moment he falls asleep it is non stop!

Too funny how much my boys are like their Daddy. Mom K didn't remember things like the gum or making up words, but that is exactly what Jay does.

Drugs - I can't stand drugs!

This morning the nurse told my mother in law that Dillon's ketones were at 40. She didn't know if that was good or not but knew that I said to tell me if they were less than 80. I'm glad she remembered to tell me! It is very important! Dillon's ketones should be "large" or 80-100. We check them by a urine strip and it changes color; the darker the purple the better. Mom K tested herself this morning and thought it was between 40-80 based on the shade of purple. I tested this afternoon and thought it was close to 40 as well.

We called the doctor and he said if they go below 40 we have to call, if they are still at 40 tomorrow we have to call, if we see any increased seziure activity we have to take him to the ED (emergency department).

The fear is that when there are less ketones in the brain he is not in full ketosis. This means he could go into a prolong grand mal seizure that could be life threatening. So far there is no increase in his seizures, Praise the Lord!!

One of Dillon's nurses started looking some things up for me since there has been no change in his diet or what we are doing with him besides the new pain medication he is on. She believes the valium may be throwing off the diet. I am not sure yet. But here is some things I am finding that disturb me greatly:

1. These drugs have sedative and anti-anxiety properties as well as being anti-epileptic. They are in fact only fairly week drugs against epilepsy, while their tendency to produce sedation and dependency greatly limit their usefulness. In practice, these drugs should never be used as a first choice, but rather reserved for those situations where epilepsy remains uncontrolled despite treatment with adequate doses of other anti-epileptic drugs. VALIUM (Diazepam, Roche Products Pty Ltd) (Great he is on that one, has been for 2.5 weeks and will be for the next month probably! Good thing we are trying to wean him back on how often he gets it already)
2. These drugs were widely used in the 1950's and 1960's, but are now considered to be obsolete. They are not very effective in suppressing seizures, but they frequently cause slowing of the intellect and depression. Withdrawing these medications can be extremely traumatic, with anxiety, restlessness, tremors, insomnia, and an increased risk of convulsions being prominent as the drug leaves the system. PHENOBARBITONE (various manufacturers) (No he isn't on this one now, but this is the one they put him on a a 12 hour old baby and had him on for months after birth! Love it!)
3. This is about Valium and the keto diet: Tablets 2mg Lactose, Maize starch, Pre-gelatinised starch No quantitative data provided. (meaning there is strach and sugar in it which are normally not good for the diet and may be enough to throw it off!)

Will find more and post more later.... Until then please pray Dillon does not have any complications with his diet and that we can get him back into ketosis! Thank you!

Dillon update

Well on Tuesday we took Dillon to the doctor, and just as I guessed, he has pneumonia. His lungs sounded horrible! The secretions were so thick he couldn't cough it up. At one point, before we took him in, we had him on CPAP with 3 liters of oxygen and he was still holding his oxygen too low. He did cough up a large amount and then started to do better, I think he cleared a plug out of his lungs. He started on an antibiotic and by the next day he was doing much better.

The next day he had his follow up at CHOP for othro. They took new X-ray and said the bones look great. The hips are right where they should be and everything is going good. We have another appointment in a month in which time they will do another X-ray and will probably take the brace off.

We are working on trying to decrease his pain medication a little so he is only on what he needs. He is on Tylenol and Oxicodon at the same time then Diazapam. We were giving one then 3 hours later another. We are now trying to wait four hours in between each med. We let him sit outside one day in his wheelchair for lunch to enjoy the sun and wind. Today Josiah, JayDonn, Truett, Mom K, Dillon and I went on a walk to the park right up the road. We had a picnic and Jay played a little then we walked back. Dillon's heart rate was pretty high by the time we got home and he is resting now. I think he does like to feel the sun and the wind, though.

Last night we (Josiah, Mom K, Truett, and I) met up with some of my extended family who was coming into Lancaster for a Sight and Sound production of Joseph. It was pretty neat. It has been over four years since the last time I went.

Mom K is planning to leave on Tuesday, after being here for 2.5 weeks. We couldn't have done it without her! We have had 3 nights I think since we got home from the hospital without night nurses. The agency is part of the problem. They knew we didn't have a nurse for several days but no one told me so I didn't know to try to find a replacement. Please continue to pray for me as I am finding new nurses and deciding what to do about people who have major communication errors (that is the politically correct way of saying it, but not how I feel like saying it!) I have a new agency starting on Tuesday night and a few new nurses. Hopefully we can all work together to make sure Dillon's care is the top priority!

Jay never ceases to amaze me at all he says, does, his funny faces, etc. Truett is absolutely adorable. He is such a happy and content baby.

Well that should bring you up to date with the happenings around our house. We truly appreciate your prayers for Dillon. He is doing better than I could have imagined! God is good!

Tomorrow

Last night Dillon started on BiPAP and was taken down to CPAP today. Then his oxygen was taken from 2 LMP to 1LMP. They also started food again for him tonight. His heart rate went up a little, but nothing to major. Tomorrow they will probably "sprint" him. This means they will take him off of CPAP and just put him on oxygen for a few minutes at a time to see how he handles everything. They have put a patch behind his ear that is for motion sickness but has the side effect of drying up secretions. It seems to be helping so hopefully he will be ok without CPAP. He HAS to be on his back, which is the worse position for his secretions.

Tomorrow they are also planning to remove his epidural which has been working to keep him numb from the waist down. This was to keep the medication from effecting his lungs (breathing). Tomorrow when they take it out they will probably have to increase the other pain medications - which comes with the risk of depressing his respiration. Please pray he will be able to breathe with enough medication to manage his pain. Please pray for wisdom for Josiah and I in knowing if he is in pain and needs more medicine. The doctors/nurses are being great at asking us how we think he is doing since we know him best. It can be hard to tell with Dillon since he can't tell us and I don't want him to be in any more pain than necessary. I am praying God would give me extra wisdom in knowing exactly what Dillon needs or doesn't need.

Everyone at CHOP has been great so far this time. I took in note cards that explain what is and what is not seizures and so far everyone seems to be listening to us. This is a huge improvement! Please pray they would continue to listen to us - the LAST thing Dillon needs right now is to be drugged to a state of unconsciousness over something that is not a seizure!

The swelling in Dillon's left foot was doing a little better. It was finally warm again today instead of being ice cold. They are checking it every 4 hours with a Doppler to make sure they can hear the pulse in it. The nice thing about the brace over the cast is they have loosened some of the straps right now while he is swollen and they can make it tighter as the swelling decreases.

I am so afraid of the pain he might be in as he wakes up and is taken off more of the pain medicine. It breaks my heart to know he might be in horrible pain - and that I caused it. I handed him over to the doctors to cut his bones in half! But, Josiah keeps reminding me, he was in PAIN before the surgery. Every single day he was hurting and he was bruising himself on his wheelchair from pushing so hard against it. So my biggest prayer is that this will offer him some long term relief. I know the next 6 weeks are going to be hard but it will have been worth it if it helps him to not be in pain afterwards! I know he will probably have to have this surgery one or more times again in the future, but I am going to do everything I can to prolong the next surgery!

Thank you so much for praying for him. I believe he is surpassing everyone expectations due to prayer! God is helping my little man fight. Thank you!

Truett Rolled!

Tonight Mom K, JayDonn, Truett and I went to church then came home. Josiah doesn't have to work tomorrow so he is staying at the hospital with Dillon.

A few days ago Truett rolled a few times from his stomach to his back - which of course is the easier of the rolls. Tonight he rolled from his back to his belly! Several times! He is laying in Dillon's bed and rolling around as he sucks his thumb. Good job Truett! He is about 3.5 months old.

The hourly updates from the surgery

Well I tried to get these in the right order, but they're not. Oh well at least they are all there with the times and everything. I had updated facebook every hour when they gave up updates so I didn't want to lost that information. One thing that wasn't on there, because I wasn't told was Dillon did have a blood transfusion (about 200cc of blood).

Surgery update

Dillon is out of surgery. Will try to update tomorrow. Surgery went from 10:50am untill about 8pm (about 9 hours!). They had to do the most invasive procedures on the left hip. This means they had to do an extra incision and dig out the hip socket and even cut the pelvis bone and use part of the femur bone to change the angle of the pelvis. He is still intubated in the PICU and on a LOT of sedation drugs. he is having a lot of little seizures though. He is such a little fighter - he is still waking up, opening his eyes, lifting his arms in the air, coughing against the breathing tube to clear secretions up and out of the tube, breathing "above" the tube (he is doing the work not the tube) etc. They gave him more sedation drugs to calm him down. Please continue to pray for him.

Will post more tomorrow. Thank you!

Surgery!

Friday Sept 3 Dillon will be in surgery. He has to be at CHOP by 6:15am for a 5-8 hour surgery.
Here is what he is having done:


a. Bilateral femoral osteotomy - this is where they are cutting both femurs, re-angling the bone and putting them back together with large “L” shaped plated and screws
b. Cutting both Iliopsoas tendons
c. Pulling the left hip back into place, if it does not go in on its own they may need to cut additional muscles, dig tissue out of the hip socket and/or cut the pelvis and use part of the femur to re angle the pelvis.
d. Injecting dye into both hip socket to exam the degree of damage
e. Releasing un descended testicles
f. Double hernia repair


I wanted to finish catching up before now but didn't have time with all the pre-op stuff. Ohj well, will play catch up later. Please be praying! He is going to be in a lot of pain and mad that he will be strapped to a brace afterwards for 6 weeks!

Will update tomorrow if possible.