Wednesday, July 09, 2008

Doctors and More

Well, if you're reading this, then you got the invite so WELCOME!
I was going to save this post for a few days and instead post some pictures of our Fourth, our play date wtih Ana Claire, and some other fun things. But, I'm having issues with my camera. Every time I connect it I get an error message..it's never happened before so who knows? Hopefully I can get it resolved soon. Until then, no pictures.

So, here's what we've been up to lately other than the fun stuff:

Let’s see: 2 Adoption clinic pediatricians, developmental specialist, family therapist, ultrasound technician, opthamalogist, audiologist, orthapedic intern, orthopedic physician , x-ray technician, occupational therapist intern, occupational therapist (three times), regular pediatrician, plus untold nurses to weigh, measure, draw blood, give shots, and provide stickers afterwards!

9 appointments with doctors or therapists (some combined multiple of the above people)

Snacks, treats, and small books and toys to keep us busy

Trips through the drive through at McDonald’s for lunch after some long mornings in clinics

A few tears, but more giggles

Well, we know our way around both Children’s South and Children’s Hospital! We have been busy the last few weeks with a variety of appointments. And these are all just for Sadie.
Besides that, I have been to the endodontist once and oral surgeon twice (once for work done, once just to check up on it). Hannah has been to the pediatrician (and was the recipient of some of the shots - those “five year old shots”) and has started back in speech therapy for a short 4 week summer session (twice a week.).

I can see the end of the tunnel though…we only have a few more appointments scheduled. Sadie goes back to the orthopedic doctor next week and the occupational therapist in a couple weeks. Hannah goes to the dentist at the end of the month and has 6 more speech sessions this month. August is FREE (well..we start back to school so it’s not exactly free..but you get the point). I have guarded the month of August with all I have, insisting no appointments in August unless someone gets actually sick. No routine or healthy kid appointments allowed - we’ll be busy enough. :-) In September Sadie has two more follow-up appointments - one at the nephrologist (that’s kidney doctor) and the geneticist. Oh yeah - I forgot, Hannah goes back to the cleft clinic sometime late October and Sadie goes back to the regular pediatrician in November and then in December is Sadie’s 6 month follow-up at the adoption clinic…and…Sadie will have a few more OT appointments this fall and Hannah will do another semester of speech probably starting late September or early October (twice a week for about 8 weeks) and….okay, who am I kidding? It’ll be a while before we’re finished. But it is slowing down now that we have most of these initial visits out of the way. Actually, I’ve already cancelled one appointment last week . It was Hannah at the adoption clinic. They usually don’t see kids after the first year, but because Hannah was still having significant delays in speech and language this time last year, they were going to evaluate her early this summer so we could come up with a plan for summer services if needed. But, for a variety of reasons, her appointment got pushed back until July. And she’s made huge progress this past year. And, she’s plugged into services already this summer. And she’s followed by speech therapists at school, at the cleft clinic, and at Univ. of Montevallo. So the poor girl has been evaluated enough. The day before her appointment, I was questioning why we were keeping this appointment when someone from the clinic called and was asking about what I was hoping to get from the visit (aren’t they great? I love that about them!) and honestly, I was like..well, nothing. I know what her needs still are regarding language and feel like we have a good handle on it and she’s getting what she needs. So, I asked what kind of assessments they were planning and when she told me, it was basically the same stuff she’s already had. So, I cancelled the appointment and they were very understanding and supportive. Sometimes, a morning spent playing outside and a visit to story time at the library are just more important than another evaluation, ya know?

Okay, back to Sadie. Her visits have been mostly good. Where do I start? Adoption Clinic - good reports. We love these people! Sadie is healthy- all her lab work came out great. She didn’t have many shots in China though so is now on a bit accelerated “catch up” shot regimen. Not so fun for her, but she’s a trooper. At our first visit the pediatrician noticed an “ear pit” on her left ear. To me, it looks like a freckle. I’d have never thought anything else about it. But, she said it could be indicative of something going on with the kidneys and so she sent Sadie for an ultrasound. Sure enough…her kidneys are sort of misplaced. Her left kidney is a pelvic kidney which just means it’s in the pelvic area and never rose to where it should be. Her right kidney is slightly higher than it should be. According to both the dr. and the technician…it likely means nothing except her kidneys are in a slightly different spot. Many people have a pelvic kidney and some don’t ever know it. All initial indications are that her kidneys are working fine as there are no symptoms of them not. But, just to be safe, they have referred us to a nephrologist to get everything checked out. We go in September. We have also been referred to a geneticist to rule out syndromes that can accompany a radial club hand. I’ve been told there are no obvious red flags that would indicate a syndrome, but that it’s always a good idea to get it checked. I agree especially now that we have the kidney thing going on in addition to the hand. That appointment is in September too. Between our first and second visits to the adoption clinic (about 5 weeks apart), Sadie gained 1.2 lbs. As she’s still less than 5% on the growth chart for her age, that was a good thing. The family therapist at the adoption clinic gave us a good report and thought Sadie was well on her way in terms of adjusting. The developmental therapist and I agreed almost completely on how Sadie was doing in her development. She’s actually a good bit delayed in many skill areas, but is already starting to make some jumps. Interestingly, she was not delayed at all in fine motor. Her use of her hands (which is supposed to be her special need!) is age appropriate at this time. It’s amazing what she can do..use a fork, spoon, take off shoes, zip and unzip, just about anything she wants really. Gross motor and language are actually the concerns right now. I see an improvement just in the time I’ve had her so I’m not too concerned. The plan is to give her lots of opportunities to move and talk! She definitely has a good role model for both of those in Hannah who loves to be moving and talking all the time! Seriously though, she’s managed to learn to climb up stairs just this week at the park…and is saying a lot more words too. Hannah, who you have to remember has had two years of speech therapy, is now taking on the role of therapist. I often catch her “playing speech” and saying “look at me. Say…ORANGE JUICE” or “say light..no, not Night..make your L sound”. It’s pretty funny! The dev. Specialist recommended we look into speech for Sadie this fall…so we will wait and see how she’s doing and then if I think she needs an extra boost, will try to get her into speech the same place Hannah goes (same day and time would be awesome! But that might take some um..sweet talking and fingers crossing!) She is also recommending a few sessions with Physical Therapy to give her a jump start. That remains to be seen if we can get in before school starts. I’m on the fence with that one..it wouldn’t hurt and insurance will probably cover it. But, I’m not sure it’s necessary at this point either with the fast progress she’s starting to make. So, if we can get a couple sessions in before school starts, fine. If not, I will probably decline and give it 6 months to see where we stand. Sadie’s audiology appointment was great - she hears just fine and there are no concerns there. Her vision appointment was okay. She tested as just a little nearsighted. He doesn’t want to do anything yet, but wants to see her back in two years and retest.

The orthopedic visit with the hand specialist was..so-so. The official diagnosis is she doesn’t have a radius in her left arm or a thumb in that hand and she has a “floating thumb” in her right hand. That official diagnosis is exactly the same as the “un-official diagnosis” I had before even going to China. It’s also the same as I could see with my own eyes. So, we all agree on that. What we don’t agree on yet is what to do about it. The dr. wants to splint her (which is where the occupational therapist comes in - we’re currently seeing her every couple weeks to make new splints for Sadie) at night for several months (maybe even up to a year) and then do surgery. She wants to do quite a bit of surgery and to be honest, I’m not convinced . I agree with a couple things she wants to do, but not everything. Basically, I want a second opinion. She didn’t really take time to answer my questions and didn’t want to spend any time with Sadie to see what she could or couldn’t do with her hands already. I don’t know a lot about hand surgery. But, I know enough to know that it’s very complicated and you have to be careful to make sure you increase function and not decrease it and I know enough to know I have a lot of questions. I feel like she’s probably a competent surgeon, but I need someone to take the time to answer the questions…so, I will be seeking a second opinion. The girls’ regular pediatrician has already given us a name and referred us to someone he knows to look at her, so I will be setting up that appointment soon. The good part of that visit came with the occupational therapist she connected me to for the splints. I agree with the splints,..they should help regardless of what surgery. The splint prevents further tightening of her hand and will actually stretch it out some without surgery. If Sadie later has the surgery on her wrist, the results from the splints should make it easier. Sadie doesn’t mind her splint and puts it on willingly at night. Although at our second visit, the OT had to make a different kind of splint because Sadie (aka Houdini) was somehow getting out of the first one in the middle of the night. I’m telling ya’ll - the things this girl can do with no thumbs is amazing!

The regular pediatrician visit was routine. Sadie did have to have a TB skin test (which is fine..it was simply a routine test for internationally adopted kids) and some shots and as I mentioned, Hannah also had shots. Other than that - no big deal. Well, medically no big deal. The visit was definitely a big deal to Hannah. Somebody PLEASE tell me their four or five year old is as dramatic as mine about shots! Sadie didn’t cry for her shots, but she had some sympathy tears for Hannah. Regardless, we survived and Hannah’s Blue Card for school has an expiration date of 2015 - so we don’t have to go through this again until she’s 12!! At that age, can’t I just drop her off and pick her up when they’re done? Just kidding! (sort of) Anyway, both girls are healthy. Hannah doesn’t go back for another year or two. Sadie goes back in four months for some of those catch-up shots. It remains to be seen how Sadie does with winter this year, but experience with Hannah is that we see our regular pediatrician less than any other professional because she almost never gets sick. I’m sure after her performance this week, the nurses are thankful that Hannah is a healthy child! :-)

So, don’t we sound busy? I’m just thankful we’ve had the summer to knock a whole lot of these appointments out. And like I said, I’m guarding my month of August! But really, despite all our visits to the doctors, it hasn’t seemed bad. We just take it one step at a time and do what we have to do that day. And then try to do something fun too. Sadie’s emotional adjustment has been great and that makes a huge difference. It makes things feel easy. I mean, who wouldn’t love a 2 year old that sleeps through the night, eats well, is pleasant and compliant mostly, who runs to you in the morning with arms outstretched saying “hug!“, whose laugh is contagious, who smiles and says “Tank oo” (thank you) every time you hand her anything, and who hasn‘t thrown a temper tantrum yet?? (maybe we’re still in the honeymoon phase…and we still have the age of 3 to get through, but I’ll enjoy her easy-going personality as long as I can)
And Hannah, well, she gets a little jealous from time to time. There’s some normal sibling rivalry stuff. She’s a bit more spirited and not quite as ..umm. ..easy-going (I like to think of it as she’s passionate!) But, when I catch her “reading” to Sadie or playing “speech” with her or I hear them giggling in the other room together (when they’re supposed to be sleeping), or when Hannah stands as tall as she can and proudly announces “SHE’S MY SISTER!” to literally everyone we see….it makes me smile and makes me so grateful that these two have each other. A few weeks ago I had put them to bed and gave Hannah instructions to “be quiet and go to sleep”. A little while later, I heard her get out of bed. I walked into her room ready to tell her to get back in bed. I stopped at her doorway just in time to see Hannah standing over Sadie’s bed, looking over her safety rail, standing on her tiptoes trying to kiss her. It was too sweet!!

So, this is probably more details than most of you wanted. I’ve had several people ask how things went with some of our appointments and I usually say “fine.” Things are fine, but the details seemed a bit much to get into with some quick conversations. So, here it is..our summer at the doctors! I myself have learned a lot through this summer about medical care. I’ve learned how much I appreciate living within close driving distance to a major children’s hospital. I’ve been reminded how much I appreciate having such good insurance. I’ve learned how wonderfully supportive and helpful many in the medical profession are. But, I’ve also learned that while they know more about technical and medical things, I know more about my kids’ personalities and functioning on a day-to-day basis. I’ve learned to listen carefully to what they all have to say, but then consider what I know to be true as well in making decisions.

Well, hopefully next time you check back, I'll have the camera thing figured out and can have some pictures up here!

9 comments:

Melisa said...

D, I'm just so proud of you, and of Hannah and Sadie! Of course we know that Hannah is a dramatic child and what in the world would we do for entertainment if she weren't?? Sounds like Hannah and Sadie are such perfect sisters. Much hugs and kisses to all of you. Love Melisa (and Elisabeth of course!!)

Sherri said...

Wow--my head is spinning at all you've had to do!

I'm glad you have gotten good reports! That is hysterical about Hannah playing speech with Sadie.

Sherri

Sonya said...

You are one BUSY Mom!!! Thanks for the GREAT update! Can't wait til you get the camera issue worked out!

Sonya

PS did I send you an invite to our private blog?

Tina said...

Oh my goodness you all have been sooo busy. My now 8 yr old dauther also totally freaked out w/ shots so dont worry about Hannah! I hate them too!

Grandma said...

Glad you have the summer off from school. Can't wait to see "all the girls" next week.

The Ferrill's said...

GREAT update DeEtte! I remember feeling all "doctored" out in those first few months home with K & Q. Thankfully we had a slow spring and summer! Just some check ups and I love that! We're gearing up for being "doctored" out again with little Candace! ;)
Kimmie goes next month back to the ortho..I'll fill you in on that.
I too am so thankful we live so close to Children's (1 hour is nothing!) and SO very thankful that our children are so "healthy!" Don't you agree that we have such healthy "special needs" children? They amaze me!
Can't wait to see you Sat? Are you still on for the zoo...get ready to sweat, huh? ;)

Doreen said...

Holy Cow!!!!! Do you have time to got to the bathroom!!!!!!
Great hearing that things are moving along. :-)

Doreen in Montreal

Anonymous said...

so i felt bad about out drs in june and thought we got a short nothing of a summer since really we started feeling better in july... ok so I will not feel sorry for myself any longer... my heart goes out to ... most of my visit to drs come in threes ... and i go at that alone... ugh!!! makes me tired reading... so thanks for adding me and hopefully Thursday we can play!!!

Karen said...

Hey girl,
LOVE the details! :) and glad to hear everything is going well. The girls are so sweet together!
On a side note, GET THE SECOND opinion! or 3 or 4 or more until your gutt tells you it's right. I've already had Q at 2 childrens hospitals about her ear and haven't made a final decision. We will go back to the Boston/Harvard Dr again next summer and then I'll see if we start surgery or we go elsewhere. It's not minor surgery so I want to know in my gutt it's right??
Stay in touch!
Hugs,
KL and Q