Pink and Blue Collide!!

The other day I was getting Toby ready in the morning, and had Caris in his bed too (which frequently happens).  Toby's care is pretty extensive in the morning...and I looked down to notice that Caris and Toby's blankies were lying next to each other on the bed.  Such irony, I guess.  Up until 4 months ago, our house and my world, was just a world of boys.  I was completely okay with that - love boys (even the rowdiness to a degree).  When I was pregnant with Toby (our third), didn't really even want a girl; just content with the way things were.  Then, as time drew closer for me to have our fourth (we didn't know gender), for the first time in 6 years, I had such a strong desire to have a girl.  I am the oldest of 3 girls - very close with both of my sisters and my mom, it sparked a desire to have that same kind of relationship with my own daughter.  I imagined 18 years down the road when my boys will leave me to be with their own wives...let's face it that old adage "you lose your sons" is true.  Then God saw fit to bless us with a precious baby girl.  I didn't think I would really get into the clothing, hair bows, and fun accessories (up until this point tights and hair bows scared me.  I enjoyed the simplicity of the buzzed hair cuts and boys' clothing - it's much faster out the door in the morning),but my view has changed.  Bruce can barely keep me out of the Carter's store - their sales kill me, and I enjoy buying dresses and all the fun things for a girl!!  The other part of this is the love that the boys have for their sister.  All 3 of them just adore Caris, Toby is enamored.  We were really nervous about having this fourth baby - up until her birth Toby was scared of kids 12months-2 years old, and would cry when they were around him.  However, things have been wonderfully different - God answered our prayers and Toby just LOVES his sister.  He thinks she is his baby and constantly wants to hold her.  God has certainly blessed us with this precious daughter and she has completed our family.  We have now closed the book on my "child-birthing" years, our family is complete!

Organized Chaos

Organized Chaos - that is the story of our lives.  I have come to grips with the fact that having four kids and one with special needs means chaos, and that's what our past weekend was like. 

It consisted of two baseball practices (Conor and Garrett), one t-ball game (Toby), one Cubbie picnic, and a Crew Game. In the middle of all of that, I spoke at an event on behalf of Nationwide Children's Hospital - sharing our story of Toby and what the hospital has meant to us. It was for a group that raises money for the hospital.  In the middle of all the chaos, I have asked myself is it worth it?  Yes, yes, and yes; I certainly am determined not to over-schedule our kids, and really they are only involved in a few sports a year, but it's important to me for Conor, Garrett, and eventually Caris to not feel as if Toby prevents them from doing certain things; yes it will happen in some cases.  Like, I still haven't completely gotten over the fact that we may never be able to go camping again or spend days and days on the beach (with Toby's trach)...so that's when opportunities arise for the kids to participate in other activities we do it and try to schedule the chaos!

Toby started playing t-ball this season. 

He's playing in a league specifically

designed for kids with special needs. 

I love this photo of his hand over

his heart and his hat off for the

National Anthem. 

We're Starting Again

Since I'm not very computer savvy, working through setting up a new blog is taking forever, but I decided to "give it a go" yet again.  This blog will chronicle our family's story - four kids, one with special and medical needs, and most of all the joy that we have because of our faith in Jesus Christ.  Hope you check back often; I will do my best to post often!

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.