Monday, June 27, 2016

Nesting

Apparently nesting occurs whether you're pregnant, adopting a baby/toddler or adopting an older child. :) Because, WOW. I'm nesting.

We (driven by me, of course) are working on lots of house projects to prepare for a 5th child!  He has a bed now, all set up in the boys room and ready for him.  Three boys in one room, eeeekkkk!!!  We're gathering up some personal things for him to help him feel at home.  Letters to put his name on the wall just like his siblings, his own cups for the kitchen and bath, etc.  Nothing major as we have more than enough clothes and toys, but we want to make sure he has some special things just for him.

I also have a compulsive need to clean out closets, put up some fresh paint, make lists and organize. Thankfully we have lots of free time this summer and I have a very willing husband to help me check things off my list!

We put in a request for an update a couple of weeks ago. We're praying his orphanage is willing to give us some new information on his growth and development, as well us answer some of our specific questions about his personality, physical needs and schooling.  We'd also love, love, love some new pictures! Fingers crossed we get some new news about our boy soon.


In the meantime, I keep looking at the pictures we do have, including these of him from when he was much younger. Look at that face!




 

Wednesday, June 22, 2016

Maggie News

When Maggie came home to us in 2013, she had major surgery a few months after she got home. They repaired her lip which had split back open after its repair in China, rotated her gum line around (and saved that crazy tooth!), closed her palate, worked on her nose and put in ear tubes.

Since then, her doctors have said to just give her lots of time to see how her speech develops. We realized pretty quickly, though, that her speech issues went beyond just typical cleft-related delays.  Part of her speech delay is due to the fact that her mouth is just not shaped in a way that allows certain sounds to come out easily, which is cleft related. But her delay is much more than that and for a long time we have suspected that she has apraxia of speech.  She's been in speech therapy for nearly 2 years now, and while she has come a long way (she used to only grunt and now she does try to speak in short sentences), she is very far behind where a typical almost-4-year-old should be.  

She understands EVERYTHING and has lots of stories and thoughts to share as all preschoolers do. But when we don't know the context of what she's saying to give us clues, we really struggle to understand her. Since I'm with her the most, I'm somewhat fluent in "Maggie speak", but I'm still at a loss much of the time. People who don't know her well can't understand most of what she says.  She still struggles to produce even the most basic of sounds. Thankfully, her /b/s and /m/s are more succcessful now, but very common letter sounds such as /d/, /t/, and /s/ do not come out clearly at all.  She just cannot do it.

We've also noticed that the sounds she does make sound very nasally, which can be an issue for kiddos with a cleft.   A couple months ago, we visited the VPI clinic at Children's Hospital.  This appointment took HOURS and she was seen by ENT, speech and a geneticist.  She also had a scope put up her nose to view how the back of her throat is functioning (while she was awake-it was UGLY).  We learned a lot about our little lady.

1.  She was officially diagnosed with apraxia of speech, which is a speech disorder that makes speech very difficult.  It is separate from her cleft- she just happens to have a cleft and an unrelated speech disorder.  It's a double-whammy, making speech really hard.   What this mean is that her speech development is going to be a long marathon with years of intense speech therapy.  It takes her MUCH longer than a typical kid to master a speech sound. For example, most babies babble the /m/ and /b/ sounds before they're a year old. She has never babbled and it took about 18 months of speech therapy for her to be able to use those sounds somewhat naturally in her speech. 

2.  She has Velopharyngeal Insufficiency (VPI), which means the back of her throat is not functioning properly when she speaks and is allowing air to escape out the nose during speech rather than out the mouth. I've read that this happens in about 30% of kids with a cleft. It is not related to her apraxia. This means she needs surgery to try to correct this hyper-nasality. SIGH.  It's not a condition that will correct itself, and while it's not an emergency, the sooner the better. While it's not a guarantee, they're hopeful that this surgery will revise her palate in such a way that sound will come out of her mouth rather than her nose.  While it won't "cure" her speech issues, it may also make it a little easier for her mouth to make certain sounds.  There's also a chance that it won't help at all, but we feel that we have to give it a try.

So, she needs surgery sooner rather than later.  She'll have a couple weeks of restricted activity and will be on a soft-foods diet for about a month.  Her surgeon was already booking in September, so that wouldn't give her time to recover before we leave for China. Thankfully, they have offered us a day in July for her surgery, but we'll be an "add-on" whenever they can fit her in. She'll potentially have a long day without food and lots of waiting, but we're hoping it'll be worth it to get the surgery done in July and give her plenty of time to recover before we leave for China in September.

As of right now, her surgery is set for July 22. I'm definitely very nervous about it. Her palate will be very fragile as it heals, and she has a nervous habit of sticking her fingers (and objects!) in her mouth all the time.  She also loves to eat and will not be happy about not being able to use a utensil, straw or have anything hard.  I'm also nervous about her recovery being smack in the middle of summer while I have 3 other kids at home to care for, but it's better than having 4 other kids to care for once Joey is home!  

This definitely adds another layer of craziness to summer, travel prep, Joey prep, etc. but we're so hopeful that this is the right thing for our girl!! 


With her best friend, who also happens to be her brother.

Tuesday, June 14, 2016

Letter of Approval, Fundraising & Celebrations


On Friday we received our Letter of Approval from China for Joey!!! That's a very important step, one that took 71 days for Maggie, but only took 24 days this time. Whoo-hooo!!!



Now that we've reached that milestone, we can get a better idea of travel. While August travel is a possibility, we'll wait until September to get acclimated to the new school year before we leave for China.  But September is truly right around the corner!  We're in countdown mode, working like crazy to get his room ready, prepare for our trip and get some projects done around the house. Along with our normal every-day craziness!

We have not yet met our goal to receive the full benefit of  the matching grant. We are extending our deadline, so it's not too late! We are still able to receive donations to go towards that matching grant, and would be so appreciative!  We're trying to raise funds to cover our travel costs, in-country costs and his orphanage fee.

If you'd like to donate towards our grant, here's how:



1.  Please make checks payable to “Lifesong for Orphans.” In the memo, please note our family name and account number, “Coleman 5974”.  Please mail to Lifesong for Orphans, PO Box 40, Gridley, IL 61744.

2.  Another option is to give online at www.lifesongfororphans.org/give/donate. Select “Give to an Adoptive Family”. Complete the online form and fill in Family Account Number, 5974 and “Family name, Coleman.”  Note that Paypal charges an administrative fee per transaction and your donation will be decreased by the amount of this fee (2.2% plus .30 per transaction).

On Friday we also celebrated Allie being home FIVE years!!!! Crazy how time has flown by, we can't imagine life without her in our family.  Here's our first moment with her and today!


Saturday was 3 years since we first saw Maggie's face via an email which asked if we'd like to be her family. We're so very glad we said yes!!


Lots of milestones and exciting news going on around here in the midst of school ending, summer beginning and baseball abounding!