Blog Archive

Friday, July 27, 2007

Elizabeth (and the rest of us) Update - July

As we're settling in to our new home and finally making some headway with all those boxes, we wanted to ask for your prayers for a few things...

Elizabeth's feeding: I'm particularly vaulnerable to dispair in this area. While we've seen some MAJOR progress in the last 6 months, we've hit a bit of a snag. Since the move we have been unable to recapture some of the enjoyment of eating that we saw glimpses of back in SF. I'm hopeful that with a whole new team of Dr.s and therapists, we'll be able to get some good input and make further progress, but at this time, she's taking about 50% of her food by mouth, vomiting 1 or 2 meals a day and the only thing she expresses enjoyment of is purreed mac'n'cheese. While that's something...I can't feed her a 1000 calorie diet in 80cal doses of mac & cheese. Add to that the awareness that kids in her position often latch on to one thing and if we're not careful, she can max out on it, suddenly stop liking it, and then we're back to square one.

I've got a lead on a fantastic intensive feeding therapy program with great success rates (ironically, back in the Bay Area and JUST approved by our previous insurance....oh the timing) but the therapy itself costs close to $17,000 and isn't covered by our current insurance. She's willing to give me a consultation and some input for 170$/hour....and that's beginning to look REALLY appealing. So we need wisdom and grace. I'm looking ahead at the arrival of Baby Girl Deux and can't begin to imagine tube feeding and breast feeding and juggling both all alone. That said, I couldn't have imagined "doing" our life as it is now, and yet somehow God has provided the grace and strength for the past 2 years. Now we need Him to fill our resevoir once again.

My Pregnancy: Also a bit of a challenge. I'm taking things slowly, and by the grace of God have avoided symptoms that would require bedrest, but we're asking the Lord to heal me completely and let us proceed with a "normal" pregnancy. This coming October, our family will fly to the Bay Area for a Memorial/Family Reunion weekend in honor of my Grandpa's passing. I really want to be there, but need an uneventful pregnancy in order to get travel clearance. Would you join us in praying for God to bring His resolultion to these details, and for us to walk in trust and peace while we wait?

Matt's Job: has turned out a bit differently than he anticipated. He specifically needs favor with his boss, so that he can discuss how to make things work moving forward. In the mean time, he's exhausted, frustrated and sees no end in sight. Would you pray for grace and encouragement for him? He especially wants & needs the Holy Spirit to guard his tongue so he doesn't make matters worse with his words.

Finally, our move has been somewhat of a challenge as well...lots of sickness, MANY extra expenditures that simply didn't need to occur. And all in all, where things could go wrong...they have, and where things just shouldn't go wrong...they have. So we're weary! We need grace, stamina and overcoming faith to maintain our joy these days. We'd really appreciate your prayers for us to that end.

Here are some recent photos of Elizabeth:

Tasting a pickle - she actually liked it! Salt, vinegar...what's not to love? Do you think I could count this as a vegetable??

Walking with Daddy

Just hanging out with Daddy

Playing in her spilt milk. I was measuring her food, turned around and she was splashing away. The funny part is, I didn't for an instant think about the $5.50 I'd just paid for a 1/2 gallon of organinc, hormone free milk (250ccs of which were now mositurizing our tile floor)...instead, my first thought was, "oooh, this is good therapy...'Splash Elizabeth! Enjoy the wetness! Get it all over!'" :)

I love this photo. This just feels like "normal kid eating" to me. It's probably because I have a photo of me at a similar age...face covered in spaghetti. In this shot, she's signing "signing times"...trying to get me to move out of the way of her video...silly kid!

Wednesday, July 18, 2007

Fun, Fun and more Fun...

  So Elizabeth LOVES the Hokey Pokey. It helps that she has an Elmo doll that sings and does the dance, so she's learned how to put her "right foot in" and "shake it all about"'s the cutest thing. Here, she's doing it with daddy.

  Today at Costco we tried a sample of chicken nuggets...she LOVED it! So I bought them (of course) and here she is trying them at home. By trying, I mean, she chewed off a piece, sucked all the salt and flavor out, and then spit it into my hand. Hey, in the world of feeding therapy, that's HUGE progress.

  Elizabeth LOVES the swing. She says "whee!" over and over to tell you she wants to go on the swing. We finally hung one from our back porch (now that we have one) and she's in pure heaven.


I can't say that I blame her. Now if we could only find a way for us to recreate this indoors...where the air conditioning is!
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Thanks Daddy!

Monday, July 16, 2007

Settling in St. Louis

We've arrived! Elizabeth did beautifully on the plane. (for those of you who prayed for us specifically...we had an open row on the first leg which was delightful. The 2nd leg was jam packed, but Elizabeth was a perfect angel and I couldn't have been more proud.)

Our arrival was not without its bittersweetness...On July 11th, My grandpa (who has been living with Alzheimer's) passed away on his 88th birthday. We are overjoyed that He followed Jesus and is now whole in body, mind and spirit, but sad over the loss of someone we love so much. My sister wrote a beautiful tribute to him on her blog: We will miss him.

Since arriving, Elizabeth has certainly flourished in her gross motor activity. She's crawling everywhere, pulling up on everything and exploring her new world. After only 3 days her daddy thought it was high time for her to tackle the stairs...check out these videos of our super-climber!

We're now in the process of setting her up with her new medical team and getting her scheduled for early intervention and her Physical, Occupational, Speech & Feeding Therapies. While she's flourishing in her gross motor development, as is to be expected, Elizabeth regressed quite a bit with her feeding during our 3+ weeks of upheaval. I hear this is normal for toddlers, but when the stakes are so high, it can seem even more dire. I've been trying to restrain my anxiety and slow the pace of progress a bit and thank God, we're beginning to recover some lost ground. If you're interested, the following is a short video about feeding disorders that may help you understand what our life has been like and what the future would be if she wasn't learning to eat.

Matt is enjoying his job more and more as he gets acclimated and most of all we're loving our new life of evening walks, grilling on the back porch & chatting with our SUPER friendly neighbors (everyone out here talks to you!) I'm still wrapping my mind around the fact that I can actually pack away all those sweaters, jeans and coats we used year round in SF, because we won't be needing them for a good 3 or more months! The humidity hasn't killed us yet though, and we're eager to explore free zoo, the science center and the huge park a few blocks away. Bring on (sub)urban life!

Sunday, July 8, 2007

Happy 4th of July

Just a quick note to tell you we're doing well. Here's the rundown:

*After spending just 4 days in the wide open spaces of Granna & Papa's house, Elizabeth is a mobile child! In honor of Independence Day, Elizabeth started to crawl....I mean, really crawl...check out this video. She's also pulling up on everything and generally acting like a toddler, which is warming my heart and delighting anyone who happens to be in the room.

*We've found out that sometime in December Elizabeth will get to share her room with a....little sister! That's right, Baby Harms Deux is a girl and we're thrilled. Because of Elizabeth's condition, I've been more closely monitored this time around, and the good news is, on our most recent level 2 ultrasound & fetal echocardiogram, BGH2 looks great! We're not seeing any of the problem signs that were present on Elizabeth's ultrasounds, so we're thanking God for that. Unfortunately, they've discovered a few problems with me this time around, the most notable of which is, placenta previa...a condition which means the placenta is covering the cervix, and if it doesn't resolve by itself (which it can) will require a scheduled c-section for delivery. While I'm disappointed to be looking ahead at another "high risk pregnancy", Matt and I are already experiencing God's peace. Would you join us in praying that God would heal anything that's out of line in my body and protect our new baby girl?

For the moment, this diagnosis means I need to "take it easy" in order to avoid being put on bed rest. In an interesting twist, it appears that my sacral-iliac strain from earlier this spring, while frustrating and painful at the time, may have been just the thing that kept me from overdoing things during a critical part of my pregnancy. God works in mysterious ways.

*Finally, we head out to Saint Louis on July 10th, and will finally join Matt who's been spending every spare minute moving us into our home. Praise God for Matt's INCREDIBLE parents who have literally made this move happen for us. We can't wait to see our new home but in the mean time, Elizabeth and I are savoring our last few days with family.

Thanks for your prayers for our journey. We'll let you know when we're safely in Missouri.

Here's Elizabeth enjoying a popsicle...she didn't really eat it, but she did enjoy a lick or two.

The Harms Girls enjoying the pool!