Sunday, April 27, 2008

My Big Helper

Saving Brenna from another fall at the changing table (she likes to crawl over and pull up onto her knees on the bottom shelf and sometimes loses her balance)
Naptime with all of his buddies
Drew sharing diamond blanket with Emily
Everyone always asks how Drew is doing being the big brother to three babies, and I always say the same thing. He's really doing great. He loves to entertain them and make them laugh and he's my biggest helper. He gets burp cloths, he brings me bibs, he gets them laughing when they're crying, and more. He's the best big brother.
Here's the cutest story behind the picture of Drew, Emily, and his beloved diamond blanket. Drew has had that blanket since he was a baby and he loves it. Up until just recently he couldn't sleep or nap without it and he liked to have it around most of the time. It is simply called "diamond blanket" and it's very special.
So, when Emily was laying on the floor on her Boppy he went over to her and said, "she must be cold down there". Then he went and covered her with his sacred diamond blanket. I was very moved by this gesture, and said, "Drew, that was so sweet of you to share your diamond blanket with Emily." And he layed down next to her and put his hand on her chest, patted her and said, "I love my Emily."
I said, "If she could talk, she would say she loves you too."
He said, "If she puts her hand on her head or on her mouth, that means she loves me."
Well, Emily very often puts her hand to her head or mouth and right on cue, she did it then.
And he said, "Awww, she did it! She loves me!"
And then, "Thank you for loving me, Emily."

I love that kid!!!

And I have to add, he also dusts, vacuums, mops, and sorts laundry too!!!

Saturday, April 26, 2008

Catching Up

Biscuit is very protective of Emily . . .
He likes to be as close as possible! you can't tell because of the blanket, but his legs are actually on top of her leg.
I almost caught the whole smile!
Awake and alert

I haven't posted a medical update lately. So, here goes!

Emily has been having weekly calcium checks to keep the doctors posted on her calcium levels. She is still using the low calcium formula and extra water and her levels have been mostly in the normal range. There was one week where it was a bit high, and so we increased the free water and it came back down. It is hovering right around the high end of normal, so it continues to be checked weekly.

She is still being fed by NG tube, and the latest news on that front, is that she is only to be fed by the NG tube right now and for probably 2 more months at least. The NG tube is the feeding tube in her nose. We are currently waiting to set her up to have a G tube put in her stomach since her feeding difficulties are ongoing. We were certainly hoping she would start eating normally again after her calcium got back under control, but that, unfortunately is not the case.

The G tube will be surgically placed in her stomach and she will get fed through that tube the same way she gets fed through the nasal tube now. But all the doctors recommend it because it is more convenient, more difficult to pull out by accident (yay), and not irritating to the nose and throat. And since her doctors don't want her taking anything by mouth for awhile, it's the way to go. I was definitely reluctant to do it for awhile because it feels so permanent, but it can be removed later too when she does start to eat again by mouth.

Now - why is she not eating anything by mouth you ask? Well, her pediatrician and I noticed that she was breathing very noisily and sounded congested. So we made an appointment to see the ENT who used a scope to look down inside her throat and found that she has a narrowing of her epiglottis (or laryngomalacia). It is not so bad that she would need to have a corrective procedure right now, but the ENT wanted to have two follow up tests, an airway flouroscopy and a barium swallow study to rule out some other complications. She also wanted her to start on Zantac for some reflux.

I think the Zantac was a good idea, because without changing anything else, her noisy breathing and congestion had dramatically decreased and is almost gone!

We had the flouro and the swallow test, and it showed the laryngomalacia and some reflux, which is what the ENT saw. So nothing new there, which is good.

We also saw the feeding team at CHOP to discuss her feeding issues. The team included a doctor, nurse practitioner, speech therapist, occupational therapist, nutritionist, and a dietician. And if she had been more than nine months old, we would have seen a psychologist too! They also agreed that she should be NPO (not fed by mouth) for now. So I can let her try to suck on my finger or a pacifier dipped in water to keep her practicing her sucking. We'll see them again in two months or so.

The Occupational Therapist from the feeding team also suggested that we make an appointment with the seating clinic to get some adaptive equipment for Emily. It is getting increasingly harder to move Emily around and find baby gear that she can "sit" in comfortably due to her inability to hold her head up or sit. She has no trunk control so she slumps in anything that is not reclined, and she needs extra head support. Right now she lays on the Boppy pillow or in the rocker/chair. She may need an adaptive stroller, sitter, bath seat, or car seat. We will have that appointment at the very beginning of June.

She also recently got a molding helmet. One of our very first concerns for Emily was her head shape, so at a follow up appt in February, when the plastic surgeon noted her head shape had not improved since November, he suggested the helmet. She got it two weeks ago and has to wear it 23 hours a day. She gets to have it off for one hour while I wash her head/give her a bath. Hopefully we will see an improvement in a few months, but it has been difficult keeping it fitted well because she is always laying down.

Her spasms have been improving. She is currently on Topomax and Keppra, and is having 1-3 clusters of spasms each day that last about 3 minutes each. This is down from 4-6 clusters a day, with each cluster lasting 5-10 minutes each. We still have some room to increase her doses a bit and maybe we'll see even more improvement. Of course, we would love for her to be seizure free, but I'm not sure that that's possible. Her chromosome disorder complicates the effectiveness of the seizure medications.

She has also been having more alert/awake periods - sometimes for hours at a time. She can make eye contact occasionally, but not hold it or track for very long. She has started batting at the toys that hang down from her playgym and make the music play which is very exciting. It is mostly by accident that she hits it- but that is how she'll learn. She has been smiling more often too!

Oh, and she has a tooth!!! Just one, on her bottom left, and it's about half way through.

Thursday, April 17, 2008

Pre-school Expectations

I'm going to be registering Drew for Pre-K next week!! So, it's only appropriate that I share this thought from Drew.

While I was pushing Drew on the swing in the backyard, Biscuit was bringing me his frisbee. He kept dropping it right in front of the moving swing! So, while I was trying to get Biscuit out of the way, Drew got impatient (go figure!!), and said "Mom, I need a push!"

The rest of the conversation went like this:

Mom: You know, Drew, you really have to work on pumping your legs to keep yourself going. When you go to school, your teacher is not going to be able to push everybody!

Drew: She will if she's an octopus!

Mom: (not able to hold back the laughter) Your teacher is not going to be an octopus!

Drew: Maaay - beeeeeee!!! (sing-songy)

Hmmm, Nemo's teacher was a sting ray after all, HA!

Monday, April 7, 2008

One Sweet Day

This song was recorded by Gee-off and his brothers, Mark and Evan, and was played at the end of their Mom's eulogy yesterday afternoon. Many were impressed with their rendition and so I thought we could share it here so those not in attendance could also enjoy it. For those who can't tell the difference between the brothers' voices, Gee-off sings first, then Evan, then Mark.

If you are anything like me, you should grab a tissue!

Click on this link to play:

If you right click on the above link, you can save the song as an mp3 on your computer.

Friday, April 4, 2008

In Loving Memory

Judith E. Gollihur
September 3, 1949 - April 2, 2008

Mother's Day Celebration - May 2007

Gee-off, Mark, and Evan, with Judy and Drew

This is Mom-Mom with Emily at Thanksgiving 2007 - one of the last times she was able to visit us at our house

On Wednesday, Gee-off's mom, Judy, lost her long and very brave battle with brain cancer. She will be greatly missed by her three sons, Mark, Geoffrey and Evan, and her daughters in-law Beki and Aimee. Drew was the lucky grandson to have had 4 years to know what an amazing Mom-Mom she was, and Carter, Brenna, and Emily will come to know her love through us.

She will be remembered forever in our hearts, and in the hearts of many whose lives she touched through her many years of teaching high school music, acting, singing, and directing musicals and the church choir.

She was generous, caring, thoughtful, and one fantastic cake decorator! She always made birthdays extra special.

We will miss you so very much.

Tuesday, April 1, 2008

Blog settings

Hi everyone!

It's so nice to know everyone is still checking in on us!

Don't forget to sign the guestbook (I moved it to the top) if you haven't yet.

And I changed some of the comment settings so your comments should come up almost right away. Before I was moderating them and somehow a few nice comments got lost!! Sorry, if your comment was one of them!

Happy Reading!