Thursday, January 28, 2010

Five and a Half (in 3 more days)!

It's been quite a while since I've done a comprehensive update about the status, feeding and growth, preschool progress, stunning personalities...and all that jazz.

It's hard to know where to begin!

Healthwise, both girls have been doing really well. We haven't had any *sick* doctor visits in...well, I can't even remember how long, and that's a good thing! Outside of some chronic stuffy noses for most of December, we've been good. I think Holland has needed 3 or 4 Albuterol breathing treatments total since her hospitalization in October. Eden needed treatments with that October sickness too, but has only needed 1 or 2 since then, and has officially been *Hospital Free* for (almost) one year!!

Holland continues to take Zyrtec daily to help manage her allergies and eczema. She has a Flovent puffer that we use nightly, in place of the Pulmicort nebulizer treatments that she used to do to help keep her asthma under control. Eden's only medication is 15mg Prevacid solutabs daily to help control reflux. Besides those, both girls take a multivitamin, a zinc and echinacea supplement, and we recently started giving them Omega-3 softchews.

Eating and growing is also going pretty good. My only complaint is that they still won't really feed themselves. I accept at this point that is partly my (our) fault. We have fed them for so long that they just expect it, and I can't seem to get myself comfortable with the whole, "eat it yourself or starve" thing yet. Not when they are eating so well and GROWING! Holland is now 41 inches tall and weighs about 32 pounds. Eden is 40 inches tall and just recently hit THIRTY...yes, The Big Three Oh...pounds!!! We are quite excited about this and hope the trend continues. This puts Holland at the 4th percentile for BMI on the *regular* charts. Eden is above the 10th percentile on the awesome CP growth charts that I recently found (she would be in group 3 with those charts).

In terms of physical abilities and milestones... Holland continues to get private PT at home once a month, and school based PT and OT at school weekly. Right now she is working on balancing on one foot, and continues to work on core strengthening. She is doing really well jumping with both feet and climbing stairs. She can go up and downstairs without holding the railing, but I usually tell her to hold it anyway just to be safe. I still have to remind her to engage both arms when she runs (her left arm generally wants to be hand-open up in the air rather than fisted to help her balance), but overall her running is smoother and she falls less.

Holland's fine motor skills have really come along since this time last year. She is able to write her first and last name, and her letters are smaller and better formed, especially when she is reminded to write small. She draws pictures that really look like what she says they are, and sometimes surprises me. Her biggest issue with the fine motor is that she is really easily frustrated and sometimes gives up before she even gets going. One little glitch in her idea of what it is *supposed* to look like and she freaks out and tries to give up. She needs a lot of help problem-solving a way to correct the problem rather than just quitting. This worries me.

Eden has made leaps and bounds of progress in the mobility department. You may recall that she was just starting to push to sit and learning to play in the upright sitting position this time last year. She has perfected her bunny-hop crawling, and gets around the house quite speedily (is that a word?). Her upper body strength and catching reflex have improved greatly with all the exercise she does. She can maintain bench sitting for longer periods of time, can pull her legs around into the criss-cross applesauce position, pivots in and out of side-sitting while she is playing. She is also able to use both hands to play for short periods of time, and is much more balanced in the sitting position.

Eden's mind is often about 5 steps ahead of her body though, and when she gets going too fast, she has frequent tumbles and whacks her head on the hard floor. Most of the time she is completely oblivious to it and just pops right back up and keeps moving, but we all cringe when we hear her head hitting the floor. We call it "crack-a-lackin" and when there is too much of that going on we have to make her play in the family room, which we call the "soft floor." She absolutely hates being confined to one room, and will whine, "but I'm NOT gonna be crack-a-lackin!" We're thinking about getting her some type of soft helmet for her to wear at home when she is playing so that we can protect that noggin. Any ideas?

Eden continues to do private PT at home once a week, and gets PT/OT at school weekly as well. Her home PT told me last week that she recently reviewed Eden's goals from last year, and that she has met every one of them!!! Right now we are working hard on increasing stander time and more time in her pink Rifton Pacer (which requires more weight bearing than her pony walker). She also recently borrowed a nifty bolster chair that is modified with tall bars that she can sit in and use to pull herself into the standing position. She really likes this new piece of equipment, and it really opens up some fun opportunities for being more independent. Our goal for this year is that she might start pulling to stand and bearing more weight on her legs. I am cautiously optimistic.

This past spring one of my dear, kind, and thoughtful cousins bought Holland and Eden a Wii, and it has been invaluable in getting Eden to use her stander without complaint. Both girls LOOOOOVE the Wii, and could literally spend hours on it. John bought me the Wii Fit for Christmas, and we were quite excited to figure out that the balance board fits right under the new bolster/standing contraption and allows Eden to play some of the games. In fact, she has gotten pretty good at the penguin slide game and I love to see her doing it on her own.

Eden's fine motor skills are pretty good, but writing continues to be a struggle. She can write her name, but the letters are really large, might not be in the right order, and still don't always fit on the page. This is an area where she hasn't really made as much progress as I had hoped she would, and I am not sure where we will go from here. I have made it known that I want to pursue the assistive technology route more aggressively for writing once she gets into kindergarten. We will still practice handwriting, but I think to really get her best, she will need to be able to do the bulk of her schoolwork that involves writing on the computer.

(Dear Horse, Love Shadow)

Both girls have an appointment with a new pediatric ophthalmologist tomorrow. Our beloved eye doctor who has treated them almost since birth has retired, so we are going to someone new. Though I am sad to lose another doc that we loved, I am interested to get another perspective. Holland's left eye continues to turn out significantly since her last surgery, and she has a difficult time pulling it in, even when she is wearing her patch (two hours a day...still...sigh). I really don't think she is using that eye much except when her patch is on. She seems to see fine out of it, but literally moves her head to see things rather than pulling her eye in. Very sad. I fear that she will need another surgery, but I am really worried about overcorrecting (which seems to be what happened last time) and scar tissue and I'm not sure we would/could go through with it.

Eden had some updated Speech and Hearing testing done in December. The results were simply amazing. As always. I haven't received the official report in the mail yet, so I can't tell you actual scores, but I do know for sure that she made significant gains in every area, and is squarely in the average range for her real age. There were a couple of subtests where she went from getting, like 2 questions right, to testing all the way to the ceiling of the test and getting something crazy like 60 right. It was cool. On that day I took them to McDonald's for lunch to celebrate Eden's averageness. The only area that I noticed some significant weakness was in her ability to discriminate sound with background noise. This may be why we notice that she zones out a bit in loud environments where there is a lot going on. She just cannot hear as well.

We are in the process of trying to get Eden an upgrade for her cochlear implant processor. The one she has now is getting old and has a loose connection. It works, but we have to tape two of the parts together or it starts shutting off on her at random times. There is also a small crack in the battery casing. So anyway, Cochlear has come out with a new processor and she is eligible for an upgrade. There are a lot of overwhelming logistics behind it with insurance and trade in values and copays and whatnot, so I won't bore you with the details. It is going to happen, we're just not sure how soon and what kind of dent it will put in our finances yet. She is very excited bc the new processor has a remote control that she will be able to operate without taking her hearing off at all!

Preschool is going really well, and it has been such a huge relief to have the girls in the same program as last year. Eden has the same wonderful one-on-one aide, two of the rotating special ed staff are the same, one bus driver, PT/OT/ST/and HI teacher are also all the same. The kids are different (obviously), and they have a different general ed teacher and parapro...but they knew the girls from shared field trips and recess last year. All of this has just made this year seem like a piece of cake compared to last year. All of our meeting have been very unstressful (is that a word?) and the girls seem to be having a blast.

They fit in well with this group of kids, and I even think they seem more mature in some ways than some of the other kiddos. We really LOVED last year's group, and there were more girls, but I think they tended to baby H and E a little more, whereas this year they get to be the *big* girls. Eden has been taking her power chair to school once a week this year as well, and that has been a nice thing for her. I am hoping that we will be able to use it even more next year. The power chair has just been amazing for her social and emotional development. It allows her so much more independence than any other piece of equipment and I just love it. She is able to *run* around the playground with the other kids, slosh through the snow, barrel through the fall leaves, and zoom through the sprinkler... None of these things were possible before the powerchair, without have an adult carrying her all of the time. If you have a kid who is not close to walking at age 3 or 4, I highly recommend that you explore power mobility as an option. It has opened up a whole new world for Eden.

Another super cool preschool related piece of news...BOTH girls are really starting to read!!!! Gosh, I see kids learning to read all of the time at work, but it is still something so amazing to see with my own kids. They know all of their letters (upper and lowercase) and almost all of their sounds. They both have sight word vocabularies of about 20 words? Maybe more. They can do rhymes, and can generally tell me what letter any given word starts with. They are on par with the sight words...Eden may even be slightly ahead because she has more interest, but Holland is a little better right now at the sounds and rhymes. But both are really coming along, and I think they will be in a great place starting kindergarten next fall. They are also doing really good with number concepts, counting, and simple word math. Holland does great with numbers up to 10 and Eden is working on numbers up to 5 or 6.

So, this is getting really long. And I haven't even gotten to their stunning personalities yet. Guess that will have to be another post. There's still so much to tell!


Stacey said...

Great Report! Sounds like the girls are keeping you busy and happy.

So thankful you've had an all around good year of health.

Mamá Terapeuta said...

Lovely post!!!! Nice to hear from you again, and I loved the new design :D

btw, is that a toy wheelchair that i see under the caw??? Where did you get it???

Sarah said...

They are doing SO WELL. I can't wait to see how they do with kindergarten - I think they will LOVE it.

And on this topic we have experience:
"Her biggest issue with the fine motor is that she is really easily frustrated and sometimes gives up before she even gets going. And little glitch in her idea of what it is *supposed* to look like and she freaks out and tries to give up. She needs a lot of help problem-solving a way to correct the problem rather than just quitting. This worries me."

It ain't just her. You should SEE the tantrums that happen in our house when a drawing (and she would be drawing 24/7 if we let her) doesn't come out the way she wants it to. Last week we had to cut out the drawing from a picture because she messed up the bubble letter title she was putting on her book. (Bubble letters!? Crazy kid. I blame her first-grade friend.)

Also, just for comparison's sake: Shoshanna's writing also gets progressively huger and sloppier. We don't know if this is a personality issue or a fine motor stamina issue. I'm leaning towards the latter, actually, but it's hard to tell 'cause she's also very impatient.

Anonymous said...

Great post Billie!

Anna said...


nice to see a post again, and especially a post like this.

Chris said...

Hi Billie,

I stumbled upon your blog while reading another blog, Micro Mom. I have read the entire thing, from the first post, and I must say I am very impressed by not only your spirit and determination, but your writing as well! I love reading about your little girls, your family, and everything you are going through (the good and the bad).

I'm just starting this journey myself, after having my son Jack on Halloween at 25 weeks, 2 days. He weighed 1 lb, 4 oz at birth and is up to 3 lb, 10 oz as of last night. It's been a scary and weird existence for my husband and me, and we don't know anyone else close to us going through this. So it's nice to read about other micropreemies, what their lives are like, and most of all, what YOU, as their mom, go through.

I think you are doing a wonderful job, and I admire how you share not only the joy but the struggle of daily life with children with disabilities.

So thank you for continuing to blog...I really look forward to reading the latest updates on Holland and Eden, and I LOVE the pix! :)

Katy said...

This is just a wonderful, fabulous post and it warms my heart to read how well both girls are doing. It really warms my heart to see how much they continue to progress each year. As we approach Charlie's third birthday, I get a little anxious that we might be past any major development.

Anonymous said...

What a great update! Eden's language is average? That blows me away! What amazing kids you have there. You must be so proud of them both.

Justine, Romy's Mama said...

Wow, those girls are crazy amazing! I'm so happy that they're doing so well, and they're gorgeous to boot!

The Buckley Family said...

Their progress is so amazing Billie! What an awesome year it has been for you!! You must be so proud of them!

We will be starting preschool next year (actually just found out today that Annabel might start as soon as this school year ends), the new chapter is scary but exciting too! They certainly grow way too fast!

Keep up the good work!

Rachel said...

I found your blog last week and read the whole thing from beginning to end. You guys do such great work with your girls! They're going to be very confident young ladies. I can't believe how far they've come!

I'm an HI teacher in Virginia. I'm not sure how extensive your HI program is, but we offer most of our kids FMs to use in the classroom when we see a need. Of the 22 kids I have this year, only 5 of them are not using FM systems. (That's mainly because they're Deaf, or don't process sound at all.) If you have an educational audiologist, you could ask for a trial with an FM system with Eden to see if it helps her with background noise. Once our students hit Kindergarten, the educational audiologist does an assessment of the classroom environment and usually recommends an FM system for hearing in noise. Kindergarten gets LOUD! It's also invaluable when using a computer or TV. There's a cord that plugs right into the sound source and goes through the FM to the CI processor directly. I know it's more equipment for Eden, but it might help her get the sounds that she's missing. (Like "wakkles.")

That's not to downplay any of the work that you have been doing to get her to this point, or her own intelligence for getting here. It's amazing that she's scoring "average!" Especially since she's scoring average for her age and not her hearing age. Congratulations to all of you!

Keely said...

Billie..........I sure have enjoyed watching your girls grow up!! Wonderful update and post!! Loved the pictures of the art work too!!

---Keely in Atlanta, GA

Taylors said...

I love getting the update on you adorable girls! I am so impressed at how far they've come! They are so lucky to have you for a mom.

About the power chair, I have been inquiring about getting one for Ariana (will be 3 in February), and they are pretty reluctant to order one before age 5. Was it the same way for you? Ari just received her first regular wheelchair. Any advice?

winecat said...

Wait, 5 1/2 how did that happen, just yesterday they were 2 tiny, tiny babies.

It's thrilling to hear and see how much progress they have made this year. Eden and Holland aren't babies anymore (little sob) they're big girls now!

You and John must be so proud of the progress they've made.
hugs and kisses to all of you.

Susan, Mum to Molly said...

Happy Half Birthday to your gorgeous girls!

Thanks for the update - what an awesome post, must've taken you ages to write.

So glad to see/hear you and the girls are doing so well.

abby said...

The girls are nothing short of amazing. And I love these long posts that bring it all together.

Happy Half Birthday, Holland and Eden!

hallegracesmama said...

Fantastic update! The girls are beautiful and amazing as always. Good job, mama!

Unknown said...

Do a search on "kids karate sparring gear". The head gear should put a soft stop to Eden's "crack-a-lackin". I see prices in the $20-$30 range. And I see them in pink.

Gary - papa of 26 wk preemie twins, Zola and Veronica.

Wherever HE Leads We'll Go said...

I am so glad that girls are doing so well. It is wonderful to read about their progress. Sounds like it has been a pretty great year!

Anonymous said...

Wow! You've all come so far!