Toby's First Thanksgiving

I hope all of you had a wonderful Thanksgiving. We did have a wonderful time visiting with Bruce's family. The only mishap was I forgot the Mic-Key tube extension that hooks into Toby's Mic-Key button so he can eat (and we were 2 hours frome home). My sister-in-law, who is a nurse, tried to find one at the hospital where she works at, but they weren't able to. So, I called our durable medical equipment company and the on-call people delivered one to Akron (from their local branch)..Toby's food started just a few hours late! Oh well, I put an extra one in his bag. I learned my lesson.

The other thing I wanted to share was on Thursday I was just overwhelmed again in thanksgiving to God for his mercy and love for us - for the miracle that Toby is. The miracle that he is still alive, that he is growing, doing well, even sitting up! I heard this song by Stephen Curtis Chapman, and for those of you that know me well, know that music is very important to me and God often uses songs to speak to me. This song is called "Carry You to Jesus" and it is written from the perspective of someone wanting to pray for someone else and carry their burdens. It made me think of all of our prayer warriors, who daily and sometimes hourly lift us up to Jesus and it made me cry out to God in Thanksgiving for all of you. I just wanted to share the words (see below). It's on Stephen Curtis Chapman's CD called Declaration - I'm sure you can "google" it and hear a sample or hear the song.

"Thank you dear God for providing us with prayer warriors and allowing us to as Hebrews 4:16 says,"come boldly unto the throne of grace to find grace, that we may obtain mercy, and find grace to help in time of need"

Carry You to Jesus

I will not pretend to feel the pain you’re going through 
I know I cannot comprehend the hurt you’ve known 
And I used to think it mattered if I understood 
But now I just don’t know 

Well, I’ll admit sometimes I still wish I knew what to say 
And I keep looking for a way to fix it all 
But we know we’re at the mercy of God’s higher ways 
And our ways are so small 

But I will carry you to Jesus 
He is everything you need 
I will carry you to Jesus on my knees 

It’s such a privilege for me to give this gift to you 
All I’d ever hope you’d give me in return 
Is to know that you’ll be there to do the same for me 
When the tables turn 

And if you need to cry go on and I,
I will cry along with you, yeah 
I’ve given you what I have but still
I know the best thing I can do 
Is just pray for you 

I’ll carry you 
I’ll take you to Jesus on my knees

Love Our Pulmonologist

I just have to say that we really like our Pulmonologist. He's such an excellent doctor and really seems to have a grasp of Toby as a whole, not just his specialty area. We consulted with him about the new medication and he assured me that the benefits far outweigh the risks, so we are starting the new medication tonight.

The boys come home tomorrow night - we're excited to see them, but it has been a very nice relaxing week for us.

Nov 19, 2007 8:52pm

Toby is doing pretty well. He's been on and off the oxygen lately, but I think that is just going to be the nature of things this winter - cold and flu season. He is on the new medication and seems to be doing well with it. The boys are back home now, and it's great to have them home. The break was nice too! U of M did lose on Saturday, which we will mourn..but Sunday night, the Red Wings beat the Blue Jackets in a shoot-out and one overtime. Bruce and I were able to go to the game; we had great seats, and enjoyed our date night out. Our one prayer request right now - and it may seems early, but we're praying that Toby stays healthy for a trip home to Michigan for Christmas. He's almost a year old - it's hard to believe.

Have a Happy Thanksgiving! Love, The Holts

Starting Ditropan?

We went to see the urologist today as a follow-up from Toby's last kidney ultrasound. It was a long appointment and kind of frustrating because we waited for over an hour before we saw anyone. Most of our questions were answered and we have an appointment to see the nephrologist in December. We will see what he has to say about the calcium in his kidneys. The urologist also wants to start Toby on a new medication called ditropan. This is one that kids with SB are typically on. It is supposed to increase bladder fuction, which is great, but I'm a little bit concerned about the side effects of this drug. It can dehydrate, thicken secretions, cause constipation, and increase body temperature - all of which would be really bad for Toby. I have a call into pulmonary to see what his opinion is. My greatest concern is the dehydration - this would not be good for his trach and lungs. Obviously he may have no side effects at all, so we can always try it and then take him off of it, if it's bad. We will see what the Pulmonologist says.

Nephrologist and Oxygen

Toby continues to do well sitting up in his bumbo seat. He's been on some oxygen when he's sleeping the past few days; I think it's just going to be the nature of things this cold/flu season. He did receive his first synagis or RSV vaccination last week. He will get these monthly during this season because of the major health complications that come with getting RSV, which is a major respiratory virus.

Conor and Garrett are going home with Grandma and Grandpa Fabian tomorrow for a visit; it will be a nice break for mommy and will allow for Bruce and I to have some time together alone and with Toby. Wednesday, Toby will see the urologist. It's a follow up from his renal (kidney) ultrasound. They are finding nephrocalcinosis or calcium in his kidneys; he's actually had calcium in his kidneys since birth. They're not acting like it's anything major, but the Urology Nurse Practitioner did mention that they might refer us to a Nephrologist (a doctor that specializes in kidneys) to see if we should be concerned about this. He does not have kidney stones; so we will see what happens with that.

Gratefulness for His Unspeakable Gifts

Today is a day of Praise!! (This journal entry is long today! :)

Toby took a really LONG afternoon nap, so he was in a great mood tonight. Our nurse put him in the Bumbo seat and I was just amazed as he sat up like a big boy. His head would fall back, and then he would pull himself back up to midline and sit up. I took a short video.

Lately I have just been amazed at the blessings of God. I found this verse in Psalm 31:7 "I will be glad and rejoice in Your mercy, For You have considered my trouble; You have known my soul in adversities," and Phil. 4:5 "Rejoice in the Lord always. Again I will say, rejoice!" I rejoice over the milestones that Toby is starting to accomplish and also the relationships that He has put in our lives. Our friends the Weise's and their son Evan; we have been friends long before we were married, and God orchestrated Evan to be on a vent. 4 years before Toby. We even share respiratory supplies! :) I am thankful for the new friends I have made on a Yahoo group that I'm apart of - Parents of children with SB and adults that have SB. I am also thankful for the family and friends that continue to stick by us even though our lives have changed dramatically. Many could have very easily walked away. Just recently I reconnected with a friend from college who also has experienced tragedy in her life. Some of the same verses that spoke to her during their time of grief has been some that we have also treasured. Psalm 40:1-3 "I waited patiently for the LORD; And He inclined to me, And heard my cry. He also brought me up out of a horrible pit, Out of the miry clay, And set my feet upon a rock, And established my steps. He has put a new song in my mouth - Praise to our God; Many will see it and fear, And will trust in the LORD."

God is such a personal God in that, I know that with my personality I wouldn't have been able to handle Toby as my first child..I'm glad we knew before he was born, so with my Type A personality, I could plan..but God has also continually used that to teach me that He is always in control and I have to trust Him daily. I could go on and on about the ways that God has tailored and planned, Yes planned for us to have Toby at this point in our lives with brothers to encourage him and family/friends to love and support Him and us. Praise be to the Lord for HIS unspeakable gifts!! Have a great night.

Rolling Over and Myelo Clinic

Toby's waiver is resolved; I was on the phone many many times the last few days, and several times while at Myelo Clinic on Friday. They called and said they fixed it, and on Saturday I ordered one of his prescriptions that is only covered by Waiver just to check and it went through! Thank you for praying!

His clinic appointment went pretty well. The doctors, Physical Therapist and Occupational Therapist were commenting at how big he is and amazed at his progress holding up his head, etc. The most questions we had were for seating and mobility...what might be the next step as he gets bigger? Thankfully our home PT came with us and was able to ask a lot of questions about some of the devices we are using to get him to sit up and also to straighten his legs to stand. The Physical Medicine Doctor who prescribes wheelchairs, braces and such said his feet still look great, which means he won't need any AFO's yet (Ankle & Foot Orthotics) and the PT at clinic also said that braces would weigh his legs down, so we will wait on this. To be completely honest meeting with the Physical Medicine doctor wasn't encouraging. She mentioned how as Toby gets older he may not have the mental capacity to use a self-propelled wheelchair, etc. Of course she doesn't know Toby like we do, but after we left, I was analyzing every move he made trying to see if he's going to grow up and not be able to communicate with us or have major mental difficulties. I know that many of our dear friends deal with this every day, and I know that God will give us the grace to handle this too, but right now I just don't know if I can handle that. God asked me once again to trust HIM and reminded me to take it one day at a time! Toby also had a renal ultrasound and we will see the urologist in a week and a half for a follow-up appointment.

On a happier note this weekend my grandparents (My moms' parents) came for a visit. We had a wonderful time. AND on Saturday, I had Toby propped on his tummy propped up on a rolled blanket. We were in the kitchen cooking dinner and then I look and see that Toby is initiating rolling over ALL BY HIMSELF. I went in and unhooked his ventilator, which was getting in the way, and there he went. HE ROLLED OVER! Then he did it 3 more times. Each time I needed to be the motivation to roll the rest of the way, but I didn't have to help him, I just had to be something to look at.

Lastly, I posted some new photos of Toby in his costume and the boys. Conor was Sully and Garrett was Mike from Monsters Inc. The boys had fun trick-or-treating with Grandma and Grandpa Holt.

Always Something

Hello - Please pray for Toby's HomeCare Waiver right now. We thought everything was resolved and now we're having issues with it again. They don't have him receiving nursing duty services in their system, which means our nurse is working and not getting paid - it is NOT because he doesn't qualify, but because someone hasn't renewed him in the computer system.

Also, we don't think it's anything major, but Monday Toby was so strong and yesterday and today Toby has been very floppy. He can't sit up; his head control is floppy, etc. We aren't sure if he's just going through some growing so all of his energy is going towards that or if it's because of his cold. I'm a little concerned, but we're not calling the doctor just yet. We will see how he does the next few days.