Wednesday, April 18

All the medical updates!

The last few weeks have been MEDICAL weeks!  We go through seasons at our house where we will have an appointment here-- one there-- then, we have 19 in two weeks! :).  Thankfully since many of them are the same specialists for different children, we can combine appointments and get things accomplished much quicker and easier than we might if we were headed to many DIFFERENT specialists all the time :)

Yesterday I took Wesley to the GI doctor and he's still sitting right around the same weight.  He gained a little, lost a little.  He isn't interested in the Pediasure, so we switch flavors for a time, then he gets tired of those, so we mix and match, and he gets tired of that, so we do blended, and he gets tired of that, and...  It's been a constant struggle to find something that he'll take!  He doesn't LIKE that he has to drink so much.  He wants to EAT.  But he gets about 6-8 bites of food in and he's tired of chewing and swallowing, and he's DONE.  So... drink he must to get calories, which means he HAS TO drink before he gets to have food... it's just a battle.  One we're done fighting.  Wesley is being scheduled for a g-tube placement in the next few weeks.  The goal is for him to be HAPPY and FULL both at the same time... which quite frankly just doesn't happen very often right now.  We can do overnight feeds and daytime feeds between meals.  Then, when we all sit down at the table, he can have whatever he wants of what we're having and not HAVE to have something else first.  I hope and pray this will be a step in the right direction for him.  As he grows, his condition doesn't "get easier" like many kids with Down syndrome that learn to eat later on, etc.  His is a muscular issue with chewing and swallowing, and one that is sortof something we've known was coming for the last year but hoped he might just all of a sudden turn around and just improve based on his other major accomplishments and overcoming so much in other areas.  For now, we schedule surgery.

Brianna saw the opthalmologist on Friday due to squinting to see the TV with her glasses on, and she was taking them off regularly when playing quietly with small toys.  Her glasses script has been LESSENED which is great :)!  We also took the other 5 kids with us (I had a sitter come too... and Lynae was along for the ride) and the 6 that wear glasses all were fitted for new FLEXIBLE frames!  YAY!  We are so blessed that these frames were approved to be covered for the kids with no out of pocket expense (we offered to pay in to each pair since they don't generally approve these but the perosn working with us to get glasses felt strongly that the kids would benefit from them since their glasses do tend to be broken pretty often).  They will all have the SAME glasses frames, in 3 different colors and 3 different sizes, and varying temple lengths in addition to that, but... they will all have a good pair of glasses! :)

Staying on the eye topic, Micah, Emma, and Wesley all saw opthalmology a couple of weeks ago and all received new scripts as well (Aleksa and James are on every 2 years to see opthalmology). Wesley's script increased, Emma's changed slightly, and Micah's is lessening a little as well.  Emma had a correction for astigmatism added to her script.  Those three changes have already been made in the glasses we buy as an 'extra' pair from WalMart (free replacements for a year!!) and they are all wearing them well.  Thankful we'll have the flex frames as their main pair pretty soon, though!

Brianna, James, and Emma went to cardiology last Thursday.  Brianna sounds good, and they didn't do an echo this time.  She still has a mild leak in her valve from the last 'stitch' in her open heart surgery, but she will be seen again in 6 months and likely moved back to annual appointments at that time.  Emma has a moderate leak that may require an additional surgery in the future, but it's not being contemplated right now.  She'll continue on every 6 months for a while. They did an echo and it's "ok" for now.  James had an echo to check on everything for him and he... IS RELEASED! :)  James had an ASD and PDA that spontaneously closed before we even got him, and he had a history of spontaneous pulmonary hypertension, so we continued to monitor him for two years with our cardiologist to make sure we weren't overlooking anything from his past when he changed providers.  Thankfully, his PH levels look great on echo and he has no other symptoms to indicate otherwise (he still sees pulminology though!), his heart is all healed up and looks great, and this was the LAST echo that he should need! :)  I love that kind of news!  Hoping and praying that Lynae will be released at her next appointment, and Micah as well!  Then we'll be down to cardio care only for our two with major repairs.  What a blessed day that will be!

Last Wednesday Brianna and James went to endocrinology due to unusual thyroid levels for Brianna and hypothyroid for James.  Both of their bloodwork (including their annual screenings due to their diagnosis of ds) came back NORMAL!  That means James stays on his low-dose med and Brianna can continue to be unmedicated!

On Tuesday last week Brianna, James, and Micah went to the dentist, and I shared a bit about that experience earlier on. :)  None of them have cavities, and all will go back in 6 months for a cleaning. Yay!

Monday (yes, that's EVERY day last week!) I had an OB follow-up and things are going well.  My level 2 ultrasound and meeting with the perinatologist is this Friday.  Maybe we'll get a peek at the baby's gender then?? :)

The previous week on Thursday Aleksa saw the ENT.  We will be switching ENTs.  She failed both hearing tests (OAE and Tymp) in both ears then passed just the OAE in one ear on a second attempt.  Both her tubes are out (one had been for several weeks and the other was already out at 2 weeks after) and she got them just about 8 weeks ago. The ENT's solution was "wait and see" if her hearing improves, or put more tubes in. My solution is to get my 9 1/2 yr old to hear, now, without tubes since that was unsuccessful (and actually caused 2 ear infections, which she'd had none of prior, just uninfected fluid).  There are devices to bypass the outer and middle ear which seem much more appropriate than "wait and see" when dealing with a child that has likely never heard 'normally' in her life and is having a very difficult time trying to figure out life without adequate hearing in a totally different type of situation (family vs. mental institution).  She's been home for 16 months now, and this ENT has put off doing anything but "wait and see" and the one set of tubes (after a year).  Time for change...

And finally... that Monday Aleksa and Emma went to the dentist for their first visits.  Aleksa wasn't happy about it but survived.  Emma did great, surprisingly!  Still needed some attention, but didn't fuss or wiggle too much.  Both have some cavities (no surprise) and we are waiting for them to have sedated procedures scheduled.  Both of them also have teeth that haven't fallen out despite their adult tooth coming in behind them (this is pretty common for kids with Ds) so those baby teeth will be pulled as well.

And then our week will come to a close on Friday with our 3 weeks of doctor appointments with a total of 23 doctor's appointments!  Tomorrow are Kristopher and Emma's well visits, and Friday my Level 2 ultrasound. Then 3 weeks with absolutely NO scheduled appointments (of course we're waiting on 3 sedated procedures to be scheduled...).  It comes in waves!

Monday, April 16

Today's the day!!

After about 7 weeks of waiting... today the ACTUAL construction begins!  In just a little while, our project manager will be here along with a crew to level out the ground, dig footers, and then pour the concrete slab!

Looking forward to seeing this project get kicked off, and even more so looking forward to seeing it finished in a few (short??) months! :)

Wednesday, April 11

One more day, one more accomplishment!

Today we OFFICIALLY started on our home construction!!  Our permit applications were delayed a week initially because of a miscommunication between the permit folks and our project manager... And they ended up having to get our septic system certified which took that week.  After that, our permits were applied for with a "5-7 day wait"... and 5 weeks later we FINALLY got them!!

Today the permits were posted, the air conditioner units were relocated (they were in the way of the new construction), water lines were marked out so that the slab can be poured and our main house water can be moved once the new construction is in (it, too, is where the new construction will be), and I believe the gas lines may have been set up so they can pour the new slab on Monday.

While they were starting that project, I took James and Brianna to the endocrinologist along with the other 4 kids that are at home during the day.  They all behaved well, they're used to this office and the way they do things so the routine isn't anything new.  Both kids got a full YAY on their blood panels including screenings for secondary autoimmune issues like diabetes, celiac, etc.  That's always great to hear!

James is already on a thyroid med, but Brianna's is just being monitored, so James' dosage stays the same, and Brianna avoids meds even longer.

Another plus to the day, our nurse coordinator for the kids' specialists came down and talked to me before the doctor was in and 1- got Brianna in to the opthalmologist on FRIDAY this week... instead of NOVEMBER.  She's squinting but wasn't due to see opthal for another year and the next available appointment (until this cancellation opened one up) was August... which we can't do... then NOVEMBER!  Yay for Friday!  2- she said she'll schedule James' new pulmonology appt with a doctor at that clinic instead of me needing to take over scheduling and going to a different office, etc. which means one less thing for me to have to do!!  3- she understood our wanting to switch ENT and will move ALL our kiddos to a different group that are PEDIATRIC ENT.  We'll go with that and see how it goes.

All of that was accomplished along with 2 kids seeing the dr within 40 min of our appointment time. YAY!!

We now have air conditioning again... after 8:30-4:30 work being done to get those going, and on MONDAY we will have a slab poured for the new area.  Praying we don't have rain around that time so we don't have further delays!

Our new construction will add two rooms that will be used as bedrooms (one won't have a closet, though) and we'll be converting one current bedroom in to a fully handicap-accessible bathroom with roll-in shower, hand bars on everything, roll under sink, etc.  So net gain is one bedroom and one bathroom, since we're losing a bedroom in it as well.  It will be GREAT for Wesley and Emma to have a bathroom with more access and that will allow more independence both now and as they both get bigger!

Tomorrow is cardiology x3.  Fun stuff.

Tuesday, April 10

And some days, it all just works out...

Thankfully, today was one of those day!

We all got up and going this morning about 6:30, and by 7:20 Michael left to bring Kristopher to school and Lynae with him to the church until KAD (our mom's morning out program) started.  By 8:30 I had all the other kids ready to go and was, myself, ready to get moving.  We had two sitters show up... one to stay at the house with Emma and Wesley, and the other to go with me to the dentist with me +4.

After leaving the basics of the day with our sitter at home, we hit the road before 9am... in time to grab breakfast for ME and get on the road to downtown Orlando.  We made it to the dentist sans difficulty and got in and registered.  Then, I got to start up the 4 pages of paperwork for each of the 3 kids that were about to see the dentist for the first time!  After doing this twice last week for Aleksa and Emma, it wasn't so difficult to fill out all the forms for Brianna, James, and Micah today.  I was VERY glad, already, that I'd been able to have an extra 2 hands come with me so each of the kids got a trip to the restroom before we were called back... after being in the car for an hour :).

As I finished the paperwork, we were called to the back to a room with 3 dentist chairs in it.  Hmm... ok, which ONE did they want us in??  The nurse says "one in each, are we ready?" And I must have looked at her like she's crazy as I said, "I don't think that's going to work..."  The doctor came in just then... the same doctor (different nurse) that was with me last week with Aleksa and Emma, and she said for us to all go to one end and asked who I wanted to have go first.

Brianna is the easiest going of the three, and listens pretty well, so she was the best first candidate up.  She did great!!  I stood nearby and she either listened... or just told them 'no' then listened when they insisted :).  I think the nurses may have thought they were all going to be that easy after her.

Then the same nurse that was setting up directions earlier suggesting they all go at once, pointed at James and said "Let's do Micah next."  I replied with "Ok, and started getting Micah up (since he IS who I wanted to go next!).  She said, "no, the 5 year old."  I replied with "they're both 5!"  Micah went next :).

Micah cried through the entire thing, starting with putting the brakes on when I took him from my friend's lap and put him in the chair.  He pursed his lips together as much as possible and used his strong little tongue to get the dentist as far away as possible... but in general he still did ok.  I sat at the foot of the chair... after the same nurse as earlier (there were two in the room...) protested that SHE would hold on to Micah because I was... um... (she didn't want to say pregnant??).  I waited until the doctor was there then said "I'll just sit by his feet if that's ok?" and she replied with "Just like with the girls last week?"  "Yes" "Ok" And I sat by his feet, held on to his hands, and off we went.  He struggled, pulled away, but in the end his teeth were cleaned and there weren't any problems :).

Next was James.  If you can picture trying to brush a neurotic cat's teeth... you're probably close to picturing what the experience was like for James.

I first put him in the chair and sat by his feet, then I sat him 'criss cross' and put one hand on his ankles.  Then I folded his arms and held his wrists.  Very gently, of course!  They started cleaning his teeth... and we were shocked at how great he did!  Then... they turned on the suction machine and my grip got tighter as he attempted to dislocate every single joint (he can do this... it's not like he was hurting himself...) to get FREE.  So... in an effort to not have him climb the walls so often, they opted not to use the suction machine much :D.  This was a good idea.  Even still, he would all the sudden flip out and try to stand in the chair and lean backward over the side of it all at once on several occasions and only my grip on him kept him from flying away.

We then had 2 nurses along with the dentist in there.  One holding his head, the dentist trying to work, and the second nurse holding and handing over the equipment.  And me, doing what mommies do, holding on to him and trying to keep him from going overboard with this experience :).  In reality, he actually did GREAT since he calmed down between 'episodes'.  I thought that was great!!

Before we left, the doctor made sure to mark in the boys' chart that I was to absolutely go back with them in the future.  I don't understand why most dentists have issues with parents going back with their kids.  There's really NO WAY I'd send my nonverbal kids to go in to a room where they may or may not be restrained by strangers in order for them to be able to have their teeth cleaned.  No way, no how.  Brianna... maybe.  She can talk, and she sits well, and she really wouldn't be any fuss.  The other 5 w/ Ds and CP? No way!

We were DONE at the dentist in just 90 minutes! The same amount of time it took last week for Aleksa and Emma to be finished as well. YAY!  We hit the road, got a super non-healthy lunch at McDonald's (well, chicken anyway... not SO unhealthy unless you watch those pink paste things on FaceBook...) then got back on the road by 11:45 to get home.

We got home early, in time for me to save Michael a trip home from the church to bring Lynae home from KAD, so I swung by home, picked up Kristopher's karate clothes, dropped Micah off with our one sitter so he could start on a nap, dropped off our sitter that went with me so she could have some time before she had to get to the college for her afternoon class, and headed up to the church.  On my way I realized that Brianna had gone to karate last week as well so I called Mike to see if he was planning to have her do karate this week as well.  He was, so she stayed at the church for the afternoon, Lynae came home, Mike didn't have to leave work, and when he picked Kris up after school, he wasn't going to have to come home at that time since both the little boys were home with me already (their class naps at 12, so I don't send them to prek after 11 or 11:30 if they're out in the mornings!).

Our sitter at home hung out for a while until her ride made it, and I then spent the afternoon working on a scholarship application for Kris next year.

There are enough days that things all go CRAZY, and nothing works out right... so it's always REALLY nice when days like today happen when, though busy, they all WORK!

So thankful for a day when things go right, and for the help of both of our sitters that helped it all to work out just right today too!!

Monday, April 2

Today started out...

With a load of dishes (thanks Mike!), 3 loads of laundry, 8 kids up and dressed and fed breakfast, meds given out, teeth brushed, hair brushed, three boys off to school, a shower for myself, a friend coming to babysit and our house fairy coming, all before 9am. And then... The day changed.

Then I remembered that Emma may need antibiotics before her dental cleaning, and I rushed around trying to print off the new(2007) standards showing she in no way was in the window of people needing them... Just in case the dentist wanted to see them. Then of course it wouldn't print at all, so I messed with the printer. Then it ran out of paper during the test print it was running. All three ink lights were also on. Then I got the document to print, but somehow the information about congenital heart defects was blank. Seriously... Blank.

I figured this must be a mistake and tried printing to a .pdf instead of to the printer. And it did it again. That entire area was simply blank. Next I copied and pasted to a Word document and from there was able to print. How strange!

Aleksa, Emma, and I went to the car at 9:10, when I was planning to leave at 8:50 or so for a 10am appointment in downtown Orlando. As I said goodbye I realized my purse had been left in the big van... Which Mike drove that day. We walked out to the car with the realization that I'd have to drive to the church before leaving town, and got to the van only to realize that the vest I use for Emma in the mini van was not there. Thankfully we have Radian carseats that have high weight capacities (she's over the 40 lb limit for most car seats) and with a little adjusting she was in and the three of us were off.

We stopped by the church, grabbed my purse, programmed my phone gps with our destination and we were off. I even called the dentist to let them know we were a bit behind and without even asking our names they waived it off as "fine, not a big deal". Maybe... they are really used to downtown traffic. Or maybe, I was one of the only morning appointments without a Spanish accent :).

We arrived about 10 minutes late but the wait wasn't awful, despite the 21 people standing in the waiting room which had park benches lining the walls which would seat only 12 people! Emma went first, since I knew her anxiety would just grow and grow if she had to wait for Aleksa to go. She did really well, though it was definitely a struggle for her to tolerate. She was really good, though :). We have known her teeth were bad, however we have been trying to get her in to the dentist for over two years without it working. Today was the day! Emma has 3 cavities and has two baby teeth that aren't coming out, however her adult teeth are already in behind them. She is having a sedated procedure scheduled to take care of those things.

Aleksa did ok... Though even though she understands more (as far as her ability to understand more complex thoughts... Not her ability to understand words or to be obedient...), she still behaved worse. Let's just say I'm not surprised. I held her mouth open and she whined and fussed through it all, but it was done. She has one cavity and one baby tooth that needs to be pulled-- same as Emma-- because the adult tooth is in behind it. She, too, is being scheduled for the procedure to be sedated. The other option was a full restraint and local anesthesia in the office. With neither of my girls would do well with at ALL, especially considering their pasts!

Michael came home at lunch time to relieve Chris from childcare duties and eat with the kids while the girls and I drove home for a quiet afternoon at the house with five of the kids. Michael also brought the boys home--very thankful that he can do that!!-- and we had a good afternoon with 8 littles and myself as well.

Since Michael had a meeting tonight, he didn't come home between work and the meeting so he could make up some of is missed time during the day. That left dinner to me, which was just fine. Dinner was made and served about 5:15, then baths for the 5 that have places to be in the morning, except for a detour where James and I had a battle of the wills over whether or not he would drink more than 1/2 oz for dinner. In the end, he had roughly 8 oz in his stomach, therefore I believe it's safe to say that I won that battle. He stopped his lovely angry fit and answered with "yes ma'am" before heading off for the second torturous experience of the night... Bath time.

Between his dinner and his bath, meds were done and teeth brushed, Kristopher got his shower, and the kids all headed off in their respective directions for bed. Kristopher read to the girls for 10 minutes before getting his lunch ready for tomorrow and getting himself ready for bed, and after the torture session of one of the fastest baths ever, James took a nice long diaper-clad cuddle on my chest before getting his pjs on and heading off to bed himself. With lots of hugs and kisses and I love you's thrown back to me with sweet little doe-eyes. Even if I am the evil mommy that makes him eat...

Wesley was last to be talked in to eating the rest of his dinner, but with him it's a pointless battle most days. He got pjs and off to bed with Kristopher by 7:45, just in time for me to go sit in the girls' room and ask them continuously to stop giggling, talking, getting out of bed, and better yet... Jumping on their beds!

Mike got home about then, and relax time set in :). For some reason the girls all recognized that when Daddy was home they'd best just go to sleep... ;)

Today's long day will be followed by a restful Tuesday! One where five kids are off to their activities in the morning, I set up our meal menu for the month and maybe even grocery shop, and we have no plans at all for the day :)

Thankful that this week we have no appointments on Tuesday and Wednesday, that I have our new sitter coming on Wednesday for a bit just so I can get things done around the house, and on Friday all the kids AND MIKE have off for Good Friday! We also have a sitter coming a few hours on Friday so Mike can get out and just to prepare for a Holiday weekend! Looking forward to a great week this week and a fun weekend as well!

And... I'm glad Monday is over with!!! :)