Tuesday, July 31, 2012


As I was cooking dinner last night, I realized that I am quick to share Isaac's accomplishments and challenges on my blog, but often leave out all of the wonderful things that Isabella has accomplished. So, despite the fact that we have exciting news to share about Isaac (he's walking) , this post is about Isabella.

I really feel for this girl sometimes. In her little, five year old body, she can in the matter of one minute, experience elation and quickly shift to devastation. It's like witnessing the worst PMS you've ever had, in action, right in front of you. We definitely have our good moments, but we're really working on thinking, before reacting, following directions, listening, and all of that fun stuff.

She is so much like me, it's scary. She rolls her eyes, she requires a constant supply of food, she makes the same faces I make (including the ones I wish I didn't make), she is independent and wants to do everything on her terms. Unlike me, she is incredibly brave--fearless, even. She does flips off the swing set, eagerly hopped on rides at the fair (whereas the one time I went on a ferris wheel, I was screaming so much that my dad had to have the operator let me off...I guarantee I was older than Isabella at the time).

This summer she has:
-learned to count to 100
-practiced writing numbers 1-10
-perfected writing the letter 's'
-been to summer camp one morning each week
-played piano with Josh (and Rosie when she was in town)
-learned how to control the TV remote (I'm not sure yet if that is a good thing)
-in her mind, learned how to read silently
-learned how to brush her own hair -- oh, by the way, I no longer judge you if your daughter's hair looks like a bird's nest because now I know, and will take bird's nest over screaming, just about any day.
-learned to pump her legs to swing
-helped Walter build the swing set
-decided (for the moment) that she wants to be a photographer, and told me that she and I can work together. I asked her what we should call our business and she said, "Isabella and Mama Photography".

Yesterday in the car,

"Mommy, I don't like that Isaac has so many appointments."
"I don't like it either, but remember, Isaac has a hard time learning things."
"I just wish he didn't have a hard time, and could do everything that I can do."

Believe me, I wish that too. She does have to go to more appointments than most kids, but she is usually very patient and cooperative. When we go to hospital for therapy, she gets to push all of the elevator buttons, so that usually makes her happy. I can tell she's been one too many therapy sessions when I overhear: "Isaac, you can have the train when you use your signs. No, you didn't use your signs. Sign, 'please'". Yep.

We have our good days, and our bad days, but I wouldn't trade her for the world.

Monday, July 16, 2012


Last week was really busy, and I don't think this week will slow down much either. By Thursday evening, I collapsed on my bed and told Isabella that I couldn't talk for a little while. Mommy needed a time out. 

Tuesday morning we set out on a road trip with my mom to visit my friend Laurie and her daughter, Ellie, at the Pittsburgh Chilren's Institute's In-patient Feeding Program. We spent the day checking out the facility and the program. Isaac and Isabella were great little travelers and thankfully, Isaac picked that as one of his happy days--actually, he may have used up most of his happiness that day. 

For those who are wondering, I decided to stick with Isaac's feeding therapist. I felt like I'd made some really good progress with him, and now he doesn't want anything to do with food, yet again. We'll get there. I'm determined that he will eat and if the feeding therapist won't necessarily help with food, at least she working on compliance. 

Other appointment updates: We met Isaac's new speech therapist and I think she will be a great fit for us. Isaac finally made it on the list for an OT evaluation, and then he'll start working with an OT we've already met. I think once we start with the new SLP and OT, we'll see a lot of progress. They are also willing to help with sensory issues related to food, so I'm looking forward to their insight and learning from them. He also had an ENT appointment with Dr. Milo at Akron Children's. The results of that appointment were positive and overall, he feels that Isaac can swallow safely. Today we have our follow-up appointment with his ENT at Rainbow Babies and I believe the plan is to schedule a sleep study so that we can check up on his sleep apnea which I believe has greatly improved since the tonsillectomy. 

That was a lot of boring information. Good for you if you aren't my grandma and actually read all of that! 

Back from the library, Isaac is reading "Mo" (Nemo)...

Isaac seems to conveniently fall asleep for feeding therapy...

Our 9p- yearbook came in the mail. We are enjoying reading about other families in similar situations. 

This has been my reading spot for the year and a half. It's not comfortable my any means, but if I dare sit on the couch to read, Isaac starts crying. I guess that extra one and a half foot off the ground makes him feel like I'm miles away. Isabella insists she knows how to read. She says, "I can't read the words out loud, but I can read them silently, just like you!" I guess she assumes I just stare at each page for a while.

I didn't have a wedding on Saturday, so I made Isabella's wish come true and we had a lemonade stand. We only had one customer we didn't know.

I thought the whole thing may only last half an hour, but the kids had a blast.

Opa was her first customer.

I'm pretty sure this three dollar bubble blower saved our weekend. It made Isaac incredibly happy.

Family walk

You know you've watched too much Dora when you see a bridge and tell your kids to look out for the Grumpy Old Troll!

Friday, July 6, 2012

Blessed with success...

It has been about ten months since Isaac has consumed anything by mouth. At this last feeding appointment, I suggested to his therapist that we try offering him a small amount of his blended meals with a syringe. She shot down that idea. And since I'm not really sure what she's waiting for, I decided to try it on my own. It went something like this: "Isaac, have a taste, and then you get the train (or whatever toy I used to bribe him)", he stuck out his tongue, took a taste, and swallowed. I couldn't believe it! At that sitting, he took about 5mL of blended food and then was done. At his next feeding, he had 15mL, and at his next feeding, an entire ounce. By the end of yesterday, he'd had two ounces. There wasn't any crying, or fussing, but there was a lot of cheering, and Isaac stared at me like I was a crazy person. I haven't had as much luck today, but I'm hopeful, and thankfully, because of the tube, we don't have to push him.

Last night, I snuggled with Isaac as he fell asleep, and prayed a prayer of thanksgiving for this wonderful gift of success. A much needed bit of encouragement in the feeding department. As I prayed, I was reminded of all of the blessings God has given to us over the past two years:

  • At Isaac's neurology appointment yesterday, I was reminded that Dr. Gosain (his plastic surgeon) has left University Hospitals Rainbow Babies and moved elsewhere to do great work. It's sad, but wow, I'm so thankful that he was here for us when we needed him. I can't imagine that Isaac's cranial reconstruction would be any more amazing than it is. The man is truly an artist, and forever a blessing to our family.  
  • Our house. You probably know that we live next door to Walter's parents. We moved just two weeks before Isaac was born.They've been very helpful with watching Isabella during appointments and surgeries. 
  • Isaac's physical therapist. I've said it before, but she really helped me learn how to help Isaac. I can't explain it very well, but she definitely has a gift. 
  • Dr. Mahajan, Isaac's GI doctor, who was the first to believe me when I explained that he had GI issues. She was also one of few doctors who understood what I was experiencing as a mom, in search of answers. 
  • Dr. Anne, Isaac's first ENT, who is an extremely skilled surgeon, and also the one who shared with us that we were embarking on a journey of chipping away at small issues, and encouraged us that we would work it all out. 
  • Dr. Witt, a highly skilled M.D. and Certified Lactation Consultant, who met with us when I was being told that I was the reason for Isaac's lack of growth. She confirmed that other issues were present, and that I was doing the best I could. 
  • Halle, a family friend, who offered phone support while in the PICU, and also months later when doctors were doubting me. 
  • My parents, who have sat with us before, during, and after surgeries; brought food to us, tagged along to appointments, and offered encouragement. 
  • Walter, who has stood by my side through it all.
  • Adrianne, our friend who before becoming a mom, was a Child Life Specialist, and answered all of my pre-surgery questions, and offered support. 
  • Sarah and Michael, I could write a whole post about them. They're family, period. 
I know I've left stuff out, but this is all that came to my mind last night. We are so blessed. 

Time for pictures!

Craft time. Isaac takes crafts very seriously.

 This picture was taken right before Isaac had his first pool experience

Math time!

Evelyn, who doesn't stick out her tongue like Isabella when I ask her to look at the camera...

Evelyn's been making us laugh with her puckered lips...

 Isaac scooting around in an inner tube and cheering for himself...

Have a wonderful weekend!