Thursday, December 9, 2010

Ear Surgery and radio stars

Me in Dubai. The boys look cute in the jerseys I brought home for them.
Ben and Alex posing this afternoon with Gingerbread Fred in front of the tree.
Wynnie playing "peek a boo" with Papi while waiting to get his tubes today
Dori hanging out with Papi while Wynn was getting his tube in.

Babies were on the radio this morning during morning rush hour. woo hoo!! It was for the Children's Miracle Network radiothon, to raise money in the Dallas area. Hopefully their story will help much needed funds for CMN. Their story will continue being aired throughout the radiothon this week on Dallas's 103.7 Lite FM on the following dates/times:

Thursday, Dec. 9

8 a.m. and 4 p.m.

Friday, Dec. 10

10 a.m. and 2 p.m.

Saturday, Dec. 11

2 p.m.

Aside from being radio stars, they also went into surgery today for new tubes in their ears. They did great, relatively happy throughout the morning as they waited to go under. When Dori came out of anesthesia all groggy, he opened his eyes and blew Chris a kiss, then fell back asleep. So so sweet, he's our loverboy. Both babies were only able to get one ear operated on, because the doctor said he's never seen ear canals so narrow before, so he wasn't able to get in there.

Ben and Alex brought home Gingerman Fred from school. They are supposed to take pictures of their normal "happenings" with Fred tonight and send it back to school in the book to share with their classmates. Fred is pretty cute, the boys think it's so neat.

I was gone all last week in Dubai for work. It was very beautiful, very modern and very rich in cultural diversity. I had a ball shopping and everyone was extremely nice and helpful. The world's largest mall was across my hotel. I went for the gala for The Christina Nobel Children's Foundation, and the rugby tournament her foundation sponsored. It was a super fun time, but I really did miss the boys!! Alex was telling our night nurse that I was gone at Jumangi. I guess Dubai is so far that it sounds like it would border Jumangi. ha!

Friday, November 19, 2010

Wynn's attitude problem in PT

This morning the OT and PT therapists were both here at the same time working on the babies. I have to post this picture... they put the babies face to face to see them interact. Dori loves his "lazy boy" bumbo but Wynnie was hating it today, so the whole time Dori is smiling and talking to Wynn and Wynnie is screaming mad!

Last night Chris had the babies on the floor and was pretending to "wrestle" with them. He put Wynn on his chest and was acting like Wynn was beating him up. Ben ran over and said with a really worried face "Papi are you hugging him your softest?" We had to explain to Ben that papi was only "pretending" to wrestle and that the babies were fine. That was so sweet of Ben!

Tonight Viktoria arrives ... it'll be so nice to have her here and not to mention all the help she'll provide to all of us.

Monday, November 15, 2010

Football, birthday party and fun! (11/15/10)

Boom Boom Pow! Ben getting a flag at the All Star Game!
Alex in the middle with the running back's flag.... sweet!
Dori loves story time with his night nurse.
Don't let Wynn's face of horror fool you, he loves his birthday party. The theme for the party was "You are my sunshine" since they are that and more! Their shirts say "I will make a difference", so so true!
Dori having fun around the house with papi.
The babies are proving that terrible twos are just a myth.... both had a happy weekend relaxing at home playing with their brothers and spending quality time with papi :). We are anxiously awaiting the arrival of Viktoria (from Germany). Today she arrived to NY for her Au Pair school training, so by Friday night she'll be joining our family. Welcome to the circus! I mean, welcome to your new home!

Ben and Alex continue super busy with their football season. Since they were picked for the all star team, we continue with practice 3 nights a week. They won their 1st all star games in big fashion, so they'll be heading up against flag football teams from all over the US this upcoming weekend. How exciting! Our collection of trophies is getting shinier and bigger. They are so proud of themselves, as are we. The ultimate goal if they make it past all the games this weekend would be to play Super Bowl weekend amid the festivities at Cowboys stadium. One game at a time...

Our National MPS Society fundraiser was a total blast! I hope to get pictures from people soon, but we had alot of hilarious costumes and people with a fun and giving spirit. This year we doubled what we raised last year, so I was happy to send over $4,700 worth of checks to the good folks at the National MPS Society. We allocated the money that Dorian & Wynn raised to go 75% to research (we need to find a cure!), and 25% to go to family support (for other ml2 families that may have financial burdens from medical bills, or in need of home medical equipment that isn't covered by insurance). We are so humbled by the generosity of everyone that participated in the party by donating items for the silent auction, buying raffle tickets and just having a great time for a great cause. So grateful!! So happy!

Monday, November 1, 2010

Dorian and Wynn's head

The babies had a busy day today. Wynn had an appointment with the dental surgeon for the big cyst he has growing on his bottom gums. After doing a little more research, he called the house and told us that he wouldn't recommend doing any surgery on it at this point. Which is great news because we don't want them to undergo any surgeries that are not absolutely necessary. So in the meantime, Wynnie will have a cyst the size of Mt Everest in his mouth but he doesn't seem to act too bothered with it so we are fine as long as he acts fine. Poor little guy!

Then we took the babies to Medical City really quick to get paperwork, then over to Children's for them to see the neurosurgeon Dr. Sacco. Posted above is Dori's cat scan from last week. The very noticable bump is on the back/bottom of his skull. You'll see a break/gap of skull bone underneath where the bump is. From what he saw in the scan and what he felt upon examining him, he thinks it's a dermoid cyst. Basically it's harmless. Unless the cyst begins to change alot or if he seems he is in pain, Sacco said no need for operating.

As of last week, Wynnie out of the blue had a bump pop up on the bottom of his skull too. So weird how a couple of weeks ago neither of them had anything and now within a week they both do(!!!). Since all of this sprung up not even 2 weeks ago, Dori's bump has gone from soft to hard.

Why does they have those bumps there? In a healthy baby, the skull bones are not fully formed and fused together, there are many gap areas in the baby skull at birth. As a child grows, so does the brain, so these gaps in the skull allow the brain to grow within a flexible area that allows for that growth. In Dori and Wynnie's case, their skull bones have nearly all fused together (far earlier than normal), so as they are getting older, their brain has no where to grow. So their heads are a little differently shaped, Wynn has slight bulging on the sides of his head above his ears and Dori head is uneven and pointy.

For both babies, the verdict is to do nothing. At this point it's not causing them any pain or visible discomfort so Dr Sacco felt that their cardiac and respiratory problems outweighed the risks that would be involved in operating... the only way to fix this would be to do cranial surgery to basically give the brain that room to grow (cutting through the skull to give the brain more space), so we agreed with the doctor that is completely unnecessary in the babies' case.

Chris and I were impressed that Dr Sacco really is famous. ha ha!! He and his team at Childrens were the ones that did the famous surgery on those two little boys from the middle east (conjoined twins that were attached to the head). They had a picture of the boys in the office so it was clear that Dr Sacco and his colleagues are top notch. woo hoo!

On a faaarrr more positive note, what a fun weekend! Our MPS Fundraiser party was super fun, we had a great turnout, lots of people donated for our raffle, and lots won some great prizes with the silent auction as well. We're still getting checks rolling in for the MPS Society so I won't know the grand total until we count it all up, but I think we doubled what we raised last year. woo hoo!! We're so thankful for the Caracalas's and the Mazurs for co-hosting this party with us, and for all our friends and family that showed up and had a great time. I went dressed as Tiger Woods, and Chris went as my lovely mistress.

Check out the Johnson boys in the costumes... Alex was a knight, Ben was a ninja, and the babies were pumpkins. How cute!! :)

Sunday, October 24, 2010

Dori's nugget, part 2

Dr Hermann, the pediatric surgeon, ordered an MRI and later a CAT scan for Dorian's growing lump issue. When we arrived to Medical City we couldn't do the MRI because the anesthesiologist (Dr. Kampine) told us Dori was too high of a risk to intubate & sedate during the procedure due to his major heart problems and constricted airways, so we did a CAT scan instead.
We could only get one shot at keeping him perfectly still for the images to capture. After going through ALL the verses of "Wheels on the Bus" and "Head, Shoulders, Knees and Toes" Chris and I were able to keep him entertained enough to do it without any setbacks.
Through the CAT scan Dr. Hermann found Dorian has abnormalities in his bone structure in his skull, a hole in his skull that is letting brain matter &/or cerebral fluid pop out of the hole. He told us this is beyond his expertise so now he has referred us onto a pediatric neurologist who can take a look at Dori's head and figure out what next steps should be (Dr. Sacco).
The good thing, Dori doesn't act like it hurts when you touch it so he's not in pain, but it may be causing him headaches from that pressure point. The anesthesiologist and his colleague (another doc he called in on her day off) were very candid about the permanent risks of putting Dori to sleep, and the possibility of cardiac failure if intubated through his narrow airways. Dr. Kampine is hands down the best pediatric anesthesiologist in Dallas... coming from a dad who literally wrote the book on anesthesiology (his doctor dad was a professor in med school to aspiring anesthesiologists) so we fully trust his concerns. Hopefully we'll get into see the neuro guy asap, don't know how far out since these guys calendars get booked pretty far out.
Just like in any profession, you are going to encounter people that are really "good" at what they do and people who are just average. We've been very best to be connected to very very good doctors throughout this process so that makes things alot easier when you have full confidence in their medical opinion.
Ben and Alex have been entertaining the babies much to their delight. Dori laughs out loud with Ben's antics, and Wynnie flaps his arms and kicks alot when Alex comes over to play. Wynnie figured out that as long as he doesn't cry, he can hang out as long as he wants to in our bed while they watch cartoons.
Just 3 short days til the babies turn 2 years old!! We are so proud of them!

Saturday, October 16, 2010

October 2010

This is the best... Wynnie is world's best snuggle bug

Winner Winner Chicken Dinner~~
Kept telling Alex "smile like you're NOT pooping" and this was the best I could get
Dori pondering over the Husker stats with Chris... hmmm....

I'm so proud of all my boys! Ben and Alex are really taking an interest in reading. Report cards came home and Ben showed us his ribbon for making honor roll. We jumped up and down and gave him a big hug and Alex was really quiet. We could tell he was sad, so we said "That's ok Alex, we'll get it next time right?" Then he walked on over to Ben, patted him on the back and said "Congratulations Ben." It was so sincere I almost cried! Then Chris took Alex's backpack, turned it upside down and shook it, out fell Alex's honor roll ribbon. When Alex saw his ribbon he lit up! He was so excited he started screaming "I made the honor roll! I made it!" and he took the ribbon and hugged it. I almost cried again! It was so awesome!

The Colts (Ben and Alex's flag football team) continue to be undefeated and next weekend they will play for the city championship. Chris has fun coaching them and they are on a team with alot of sweet kids.

The babies are so full of personality. When Dori gets mad at his nurses he screams "ay ya ya ya yaaiiiiieeee" over and over again until they give him what he wants. It's so funny because I haven't noticed him doing that to Chris or I yet, only the nurses. He just started doing that 2 nights ago. He's connected with his Latin side, speaking his mind in Spanish of course. :)

Wynn loves people! Today 2 neighbor girls came over to look at our halloween decorations and Wynnie was smiling and cooing and trying to touch their faces the whole time the little girls were here. It was so cute. In the background, Dori just kept saying "Hi! Hi!! HIII!!!!".

During our parent/teacher conference at school, Ben's teacher told us how proud Ben is of his baby brothers. She said he talks about them all the time. Then Alex's teacher told us how caring Alex is towards his classmates and what a sweet boy he is. It made us so proud! It's a good thing they don't see them when they are trying to scratch each other's eyes out at home over their DS's. ha ha!

The Au Pair agency got Aury matched with 3 other families (one in Chicago, one in California, and one in Pittsburg) but she turned them all down because she didn't want to leave Dallas. So instead, the agency sent her back to Colombia. In the meantime, Anna helped me all the way from the Ukraine to help me interview an au pair candidate that we were veeerrry interested in named Viktoria. Viktoria was born in Russia but her parents and her immigrated to Germany many years ago. She is a certified "caretaker" (not a nurse, but a certified care provider) and has experience with special needs kids. Anna wrote her a letter about our family and about the babies, and then Viktoria's mom called Anna to ask her honest opinion about her life with us and the demands of working for a family with 4 kids. Anna helped seal the deal, Viktoria accepted and hopefully we'll have her by Thanksgiving here in our home. We're so relieved!

Chris and I decided to take a last minute getaway to Las Vegas with our friends the Sundells. It was the 1st time we were both away from all 4 boys at the same time. We were gone for 3 days, but it was a nice little break from reality and relaxing to spend time with good friends. Marcia stayed at our house and took care of all 4 boys, and our friends the Mazurs helped entertain Ben and Alex by taking them to the state fair when they had Monday off from school while we were gone. I went to the Wynn casino to buy Wynnie a shirt and Chris a hat that say "Wynn" on it, and while I was there I thought "I'll play a little roulette in honor of Wynnie". Well I won't use this blog time to brag about how I was the HUGE winner (turning $40 into nearly $900) because this is not the forum for that, but I'll just put it out there in case anyone wondered. I think it was Wynnie's divine influence over my chips that day. hee hee hee!

Anyhow, the babies will get new tubes in their ears in November right before Thanksgiving, so hopefully that'll help with Wynn's ear drainage and discomfort problems. Today was a fun day with all the boys and I wanted to express how much love they give us by just being themselves. I took some time to video the babies playing with each other and talking to me today. We need to do more of that. We are truly blessed, and looking forward to the end of the month (babies' 2nd birthday and our MPS Society fundraiser party). If you are interested in donating, please contact me!

Thursday, September 30, 2010

Fall, Fun and Fabulous Evaluations!

Wynn taking control of his own heart check-up, grabbing the probe with a smile of course!
Dori Snuggling with Miss Jen (Bishop), future mother in law of Ben or Alex.
The UNDEFEATED Colts!! Alex 1st row, 2nd to the right; Ben 2nd row 2nd to the left
Wynn enjoying his breathing treatment

It's fall, and it finally feels like fall! It's only making it to the 80's so that's a nice cold front for us. Football for Ben and Alex is going great --- they are still undefeated in their final year of flag football (next year they move up to tackle). Yesterday the boys started their after school golf program... I think they like it. The boys have been doing great at school and they begin bringing homework and studying for spelling tests next week after report cards come out.

The babies have had their OT and PT evaluations done, and I'm happy to say both babies have progressed very well compared to where they started. In PT, Dori has advanced to the strength and mobility of a 6-9 month old, and in some cases 12 month old for certain skills. He is using little help in sitting up and he actually sat up for 3-4 seconds all by himself yesterday. The therapist and I started screaming happy but unfortunately we scared the crap out of Dori with all the hollering. oops! He started off with the ability of a 3-6 month old so we are proud of how much he has accomplished since the end of May when they started with their new therapy ladies.

For Wynn in PT, he has also made good progress as well. He started around the same level as Dori and he is at a solid 6-9 months, but lagging a little bit behind in Dori in many areas but that's ok.

In OT, Dori he is doing well. He's progressed to around a 6 month old (starting at a 3-6 month level). Wynn has progressed to around a 6 month old as well (starting off at 1-3 month level in most skills).

Yesterday they also saw their cardiologist (their new one since their old one retired). They after running tests and doing echos/sonograms to see their cardiac function the doctor bumped up their meds by quite a bit. Wynn's heart condition is basically the same as his last check up, but Dori's has gotten a little bit worse. His heart is having to work too hard so his left ventricle has enlarged (just like a muscle, if you pump your left arm with heavier weights than your right arm, then your left arm will be bigger since it's being worked harder). Enlarged hearts are a norm in ML2 kids so it's an expected progressive situation that we'll continue to monitor. They'll see their cardiologist again in 4 months. We'll continue to treat it through medicine than doing something more invasive at this point. It wasn't good news but he's as happy as could be so he doesn't know the difference. As long as he's not distressed and in pain, there's no sense in us getting worked up about it either.... just keep pluggin away.

We've been eating in our backyard and watching lots of football now that it's cooler weather. The babies enjoy being out there, Ben and Alex love having friends out there watching TV or playing around, and Chris loves his TV out there. And I can actually still watch my cooking/decorating shows during football games inside and watch the mayhem outside from my chair :)

The MPS Society Fundraiser that is coming up at the end of October is in full prep mode... Alma and Stephanie are getting the word out and evites will be going out soon. Start getting your costumes ready... bragging rights are at stake for the most creative, and prizes are being gathered for the raffle winners. yay!

Oh and on a final note, we fired our au pair. So Chris and I are reverting back to the olden days (before Anna came) when we juggle between work, big boy stuff and baby stuff. I'm actually having fun with the babies during the day so it's nice to spend more time with them. It didn't work out with Aury unfortunately... we gave it 4.5 months but she needs to be with a family that can better suit HER needs and take more time to attend to HER requests, so we're not the ones for her. We got spoiled with Anna who was very independent and very flexible with us, who was very fun and appreciative of things, so if we could find ourselves an Anna clone that would be PERFECT!! :) The agency is looking for a new au pair for us but since the babies are considered "special needs" it's hard to find a girl who wants to JUMP at the chance to be in a home with 4 boys, 2 that are special needs. Who wouldn't want to be a part of this rockin' bunch?! really!?! ha! Oh well... onward and upward!

Enjoy Fall y'all!

Tuesday, September 21, 2010

Buffalo Bills & Ironman (September 2010)

What an inspired day I had today! I was proud of the babies getting their new leg braces/boots today for the 1st time from Mr. Spencer. I think Dori remembered him from his duet with Chris the last time we were there. We are easing them into wearing these... eventually they'll wear them for about 6-9 hours per day. Today they wore them 2 hours on, 2 hours off, over and over. I told the Ben and Alex it was the babies' Ironman legs. They thought that was cool.

Then at lunch I went to hear Jim and Jill Kelly. Jim Kelly used to be the QB for the Buffalo Bills in the 80's. They wrote a book Chris bought me last week called "Without a Word". Their son, Hunter, was born with a lysosomal storage disorder called Krabbe Lukodystrophy... it's in the same family of genetic terminal illnesses that the babies have. Hunter never was able to utter a single word but his love for his parents, his sisters and life were very evident to all who knew him. Their book and the message they shared today were truly SO inspiring and such a blessing to Chris and I. Chris was gone today working in Nebraska, I really wish he could have heard their program today. So many things in their book is so familiar to us, and it was great to read it and hear it and be moved by it.

When I went to get my book signed, I thanked them for being a strong voice for the parents of children with genetic disorders. I showed them a picture of Dori and Wynnie, and then I lost it. (Tears, lips wouldn't stop quivering, snot running down the nose, the whole nine yards). But they were kind and I was so embarrassed. I started off so composed and by the time they signed my book, I left the line looking like a hot mess, sobbing. N-i-c-e.

On another note, plans are in full swing for the most awesome Halloween party this side of the Mississippi. For those of you that went last year... you know what I'm talkin' about! Party for a great cause! To raise money for the National MPS Society!! And see if this is the year I convince Chris to go in drag!! (ha ha!) Sponsors are getting locked in, prizes are being secured, and secret costume planing are all underway. Saturday October 30th is the big night, so get ready!

Monday, August 30, 2010

August 2010

Summer flew by in a flash... can't believe Ben and Alex are already in their 2nd week of 1st grade, our swimming pool is finally done (kinda), and the babies will be turning 2 just around the corner! (Oct. 27th)

Ben and Alex are once again enjoying football, Chris is the head coach. The Colts are thus far 2-0, and we have some really fast kids on the team who do a pretty good job of listening so we may have a good chance of going far in the play-offs this year. The big boys are in play-date heaven... now that our pool is in we randomly bring home at least 1-2 kids with us everyday after school to swim. We never keep the home phone outside so if you need to get a hold of us, send over one of those message planes cuz now we basically live outside. Even the babies like hanging out there now.

The babies will be getting new tubes in their ears sometime this fall, we first need to clear it with our cardiologist to make sure they are OK for undergoing surgery. Our cardiologist, Dr. Wright, retired last month :( so we are now moved over to another cardiologist who took over her patient load. We might also get adjustments made to Wynn's hearing aids once he's under for his tubes procedure. Our pulmonologist also needs to chime in about this because since their airways are restricted, we will eventually run into the problem of not being able to intubate them during anesthesia.

Next month the babies will be wearing braces on their legs to help their muscles retain the position they are supposed to be in (not little ballerinas like they like to do now), and to help them gain stability when practicing standing. The next goal after wearing braces for 6-8 hours a day for months is eventually get them into standers (a thing that straps them in by the chest, waist and legs) so they can get used to bearing weight and gaining balance in the standing position. That'll help them in many ways.

First day of School--- 1st Grade!!
Our speech therapist informed me she was going to put in a request for an assisted communication device for the babies. She feels their fine motor skills may not catch up to allow them to do sign language, but she wants to wait til January to see if their work in occupational therapy helps improve those hand movements. If not, she is confident that their cognitive responses have proven that they can learn very well how to use an assisted communication device. She has worked on them for weeks doing "tests" with picture flashcards of our family... she says "where is mommy?" or "where is Ben?" and the babies these past couple of weeks have scored 100% every time she tests them (they'll reach over to the answer in Wynn's case, or stare at the correct flashcard in Dori's case), so she concludes that cognitively they are doing great... well enough to express choices so she says they are ready for this next step. I was so excited when she explained it to me that I started crying! It's a neat little machine with buttons on it that they can press when they want to express something like a bottle, a diaper, a sad face, a toy, etc. Here is a picture of one I found when I googled...

Assisted Communication Device: This one would be for someone older, I don't think the babies would be asking for a cup of Joe, or a boom box. Or maybe they would (?) I guess we've never asked them
Wynn has been having a little hard time breating (he sounds like Darth Vader), so we're taking him into the pulmonologist tomorrow to see what's up. Other than that, we're all enjoying the slightly cooler weather (cooler is mid-lower 90's for us), the fun pool to splash around in, and the new friends the boys are making. Stay tuned, we'll look forward to posting pics once the babies get their leg braces.

Thursday, July 29, 2010

Atlantis and Summer Fun

Summer is 1/2 way over and it's been a fun one for all of us. Ben and Alex are excited for our pool that should be finished up in 2 weeks, the babies have made great strides at pt and speech therapy, Chris is counting down the days for the Huskers to take over their new conference, and I'm happy that our house is finally getting closer to having our projects complete.

Our family gave a good plug to the National MPS Society by a recent full page article they did about "our favorite things". Everyone looked really cute in the picture, including Chris and I. ha ha!!

The babies have done really well at their 6 times/week PT, OT, Auditory and Speech therapy. It's amazing how much more social Dori is now that he has a couple of favorite words. He loves to sing and to be sung to, and he'll cheer for himself often when he does a great job. Wynn is doing well too, we're just trying to get him caught up in the 2-way communication game. They both fought a little bout of pneumonia and ear infections earlier this month but have recovered just fine.

We had a total blast in the Bahamas. I've attached a video here with our pictures and video we took. The boys loved it so much that Ben asked if we could move and live there forever. The babies did so fantastically well on the plane ride and were so relaxed and chill during all our trips to the pool, the markets, and the restaurants to eat. They were never fussy, only when it was time to go to sleep. We were so proud of them, we just might start jet-setting with them more often. It was very helpful to take Aury with us on vacation. She stayed with the babies at nap time while Chris and I ran around Atlantis with the boys and when we went out at night. Hopefully she had fun, too.

The babies continue to do great with all their appointments. Both of them got abdominal sonograms this week since their GI doctor felt something in their abdomens, but he didn't seem overly concerned... he explained that he wants a baseline sonogram to watch how they progress down there. We're still waiting to hear the results from that.

Ben and Alex have done a couple of camps this summer, and still have a couple of more camps to go. Chris is coaching Ben and Alex's football team, I'm getting ready for work this fall and coordinating the PTA "Meet The Teacher Night" next month. Everyone get ready... plans are underway to for the 2nd annual MPS Halloween party co-sponsored by our awesome neighbors. Come on down to visit ... the pool will have a lounge chair and a margarita with your name on it!!

Wednesday, May 26, 2010

Cardio Update

Dorian and Wynn had their cardiologist follow-up this morning. The good news is that although the leaks in their heart are getting worse, both babies have relatively good cardiac function. These little guys have managed to keep their hearts working fairly well despite everything. There's no doubt that Dori and Wynnie are our lil heroes.

The doctor bumped up their meds to account for their weight gain since the last time they saw her. Dorian has a moderate mitral valve leak, and a mild aortic valve leak. Wynn has a moderate aortic valve leak as well.

Tomorrow we have a new home-based pediatric therapy company coming out to do an assessment. Although we have very close to our current OT & Auditory Therapy therapists, we have decided to go with a new therapy agency for OT, Speech, Cognitive Development and finally adding PT to the mix. We'll keep our current Auditory Therapist. Wynnie just LOVES her and she does such a wonderful job with him that I don't think he'll let her go anywhere. But want to get more frequency of therapy and also challenge the babies more in getting them to maximize their mobility, and our current agency just has a different philosophy on that than we do.

Our CPS case has been officially closed from our 1st sleeping nurse, so that is nice. Although I caught another nurse totally sound asleep on the babies' bedroom floor - I decided to NOT tell the agency because then we'd have to go through all that stuff again and we don't have the spare time to entertain yet another CPS investigation due to another nurses incompetence. On an unrelated note, that same sleeping nurse (#2) later had her car vandalized in front of our house ( along with 4 other cars on our street) and she hasn't been back (strange since our neighborhood is by no means the "hood"). Aside from me having to walk over her sleeping-self to help Wynn who was crying, she is usually a pretty good nurse so I didn't want to fire her.

We are all getting adjusted to our new au pair, Aury. Ben keeps asking when Anna is coming back and he is giving Aury the same cold shoulder he gave Anna the first 4-5 months she was here. In fact, I was sadly surprised when the boys tore her room up -- lotion all over her mirrors, squirted water all over her floor and bedding, and her cell phone ended up in a puddle of water. What vandals Chris and I have!! ha! They had to apologize and have been grounded this past week for their "crimes". I asked them tonight "Ok guys, you won't get in any more trouble that you're already in, but I want you to honestly tell me why you did those mean things in Miss Aury's room." Ben still swears he had nothing to do with it and that he was only trying to clean up Alex's mess. Alex explained to me he found a water bottle and his brain just kept telling him to squirt squirt squirt. Riiiiiight. Darn brain!! I had to try my best to not crack a smile when he was telling me this.

Teaching Sunday School (CCD) is over for the summer so it was nice to sleep in and not do a darn thing this Sunday with all my boys. Chris is coaching basketball for Ben, Alex and Ben finished up football, and Alex keeps doing well at his Kumon tutoring place. Lots of big milestones this upcoming month. This weekend Chris and I celebrate 12 years of marriage! Then next month Chris turns the big 4-0. I was asking the boys what we should get him for his birthday and they said "Let's get him a lego set." I don't think Chris wants to step on any more legos barefoot in the middle of the night so we'll be thinking of something else.

We are all doing well and enjoying the idea that we'll be in the Bahamas next month with the 4 kiddos enjoying some peaceful family time. Chris was telling the boys that this trip would be Dori & Wynnie's 2nd time in the Bahamas since the last time we went I was 3 months prego with them. Ben and Alex got a kick out of that. We have lots to be thankful for and we'll have plenty of reason to celebrate while we're there. Thank you all for keeping up with us and we hope your families have a great start to your summer as well. Come and visit!

Friday, April 23, 2010

April 2010

Spring has flown by with Ben being in 4 sports, Alex being in 1 sport and 2 after school activities, and the babies always busy doing their thing. Our time with Anna is almost over... she leaves in the 1st week of May. Our new au pair is ready and seems to be excited to be joining us in just a few short weeks. It'll be weird not having Anna here anymore... she really has fallen in love with the babies. With that American family that sent back their 8 year old Russian boy they adopted and Russia threatening to freeze all adoptions, Alex was concerned Anna was leaving because of that. Funny. For her going away present, we took her to the Alicia Keys concert, she loved it.

Dorian and Wynn have both made lots of good strides in their mobility and growth this month. They both roll around all over the place on the floor (fast!), both have grown quite a few teeth and both are always curious about the world around them. Our physical therapist today was so happy for Dori. She said that ever since he's been sleeping with the bipap, she has noticed his alertness, happy mood and greater tolerance for therapy has dramatically improved. Since we see him everyday we haven't noticed the huge difference, but it makes sense that a well oxygenated baby is happier and healthier. We are so proud of him.

Since the last time we saw our GI doctor, they both gained a pound in one month! That's a big deal since that means Dori won't need a feeding tube for the time being.

For those of you that keep up with us on a regular basis, you may have heard about some of our nurse issues. We have night nurses coming in to monitor Dori in the evenings since he couldn't tolerate nor sleep with his bipap mask. The nurses are also in charge of monitoring his pulse-oximeter (sp?) to measure his O2 and cardio. If O2 levels drop too much, they are supposed to administer O2 via the tanks we have next to his crib.

The first two nurses they sent were very nice people, but NOT good fits for us. The first one would pace around nervously and say over and over "Oh my God! Oh my God!" when Dori would start crying. The second nurse was sweet as could be but during her shift Chris and I had to wake up 6 different times to help her through the night.

But the third nurse who we had to fire is what this past month's drama has been all about. I found her asleep on our couch with her arms spread wide open as well as her mouth... only in the 2nd hour of her 12 hour shift. I didn't want to embarrass her and wake her up since the babies were safely sleeping in their cribs while she was snoozing, so I left her alone. But when I called the agency the next morning to tell them not to send her back, they asked for a reason and I told them it was because of her sleeping. The storm of crap began after that. I had no idea that a nurse sleeping on the job is considered child endangerment so CPS (yes, Child Protective Services!!!) was called in by the agency to report the "incident". According to the agency, they have to "self report" violations such as sleeping or else they could get their license revoked.

Alex was still at school at his science club, but Ben was home already when the CPS lady came. The CPS agent asked me all the details about the nurse, how she was sleeping, etc. Then she asked Ben directly if she could talk to him. He said "after I'm done eating my snack please." Then once he was done, she started asking him about "good touch" and "bad touch" and if anyone has ever "touched" him in his privates. Ben's eyes were huge as saucers and he kept on looking at me very uncomfortably while he sat on Chris's lap. She asked him if we ever left him alone, if we make him food, and what we do to him when we punish him. All the while, Chris and Anna and I are all staring at each other as if "Is this crazy woman REALLY asking these questions!?!"

But I was SOOO proud of him. He answered everything like a big boy and I was surprised at how surprisingly articulate he was for 6 years old. Then she proceeded to take pictures of all the kids, and note their teachers names, pediatricians name, etc for their "file in the system". Chris and I are outraged. We don't want our precious boys in the damn "CPS system"!! We didn't feel like we could say anything to her in fear of retaliation for what she may perceive as hostility or dishonesty on our part and she was writing down everything we were all saying so I felt like anything interpreted the wrong way could come back and haunt us. The LAST thing we wanted when we fired the nurse was for CPS to launch a full blown investigation AGAINST US when WE didn't do anything wrong! I told the CPS lady I never thought the babies were ever in danger under the nurses care and I didn't want this to snowball into something unnecessarily or for them to call Ben and Alex's teachers since they have nothing to do with the babies or the nurse. I am so embarrassed that poor Ben had to go through that, and we are so so angry.

At this point, all we can do is wait and see what happens. Sadly, the children that truly DO need an advocate to stand up for them against their abusers are rarely ever identified and helped out of their situation, so it's a shame they are wasting their time and energy on our family.

So I don't want to sign off on such a negative note... so I'm just glad Ben didn't tell them I threaten him and Alex often with a knuckle sandwich and tell them that if they don't know their numbers and letters they'll be homeless like people outside of the Mavs games. I supposed that would be considered mental abuse so big sigh of relief for Ben keeping it PC. HA!!!

Wednesday, February 24, 2010

Cardiology and Respiratory Update Feb. 2010

The babies had a cardiologist visit last due to our pediatricians concerns on Dorian’s heart murmur sounds getting worse. Chris had to take the babies by himself since I was en route to the airport for a couple of presentations in Rapid City, South Dakota.

After doing a few rounds of tests, Wynn’s results came back well. No need to increase his dosage of Enalipril.

Dorian’s results were concerning to the cardiologist. She agreed with our pediatrician that his heart is indeed leaking at a worse level than it was before, and his left ventricle has enlarged more too. Since his heart is not functioning properly, this may be the culprit of his breathing difficulties (more on that later). First line of action is to add a Diuretic to his regimen. The combination of his heart working too hard and breathing problems make heart failure a high risk for him our pediatrician stressed, so we are moving aggressively with meds to help alleviate the workload on his heart. We’ll try this for three months and see where we go from there. Big prayers for Dorian’s ticker please!

Dorian went through another sleep study last week with a cpap (oxygen mask on his face). He totally HATED it. All night long he either cried or tried to yank the mask off. And I don’t blame him! Between 8:30 PM – 5:30 AM he literally only slept well for maybe 1.5 hours total. We should be hearing back about the results sometime this week. More than likely he’ll need to sleep with this cpap mask to be able to get enough oxygen to his heart, brain, etc.

Both babies are really jabbering away… when I’m working downstairs in the study it’s funny to hear them yap yap yap away with Anna. Oh yeah, Anna and the babies spend all their time upstairs now since we are getting new flooring and a new island in our kitchen. Too much dust and commotion for the babies downstairs so they have moved up to the penthouse level in the room next to Ben and Alex, ☺

Both babies are sprouting their teeth (little nubs of teeth actually) and they enjoy chewing on everything to make their mouth feel better. We still have some issues of both babies bleeding out of their ears so we’ll be seeing the ENT soon to get to the bottom of that. Dorian is loving to move around on his tummy and flipping over, and he is very stealth about it. There is nothing stealth about Wynn… he is content with hogging up as much attention as possible and he’ll let you know it without hesitation. So we send Ben and Alex on a lot of “Go talk to Wynn” missions if we’re tied up with Dori. They are just so darn cute and funny!

Alex started Kumon yesterday to work on his writing and math (Kumon is an afternoon learning center, and our neighbor 8 houses down from us owns the Kumon center less than a mile away from our house). Alex loved it! He said his tutor thought he was in 2nd grade. That made him feel very smart and proud. Ben will take a break from Kumon until summer since he tested two levels higher than average. I’d like to say he gets that from me (ha ha.. jokes!). Both boys started football yesterday on a new team in a new league. It’s still fun to watch Ben at boxing, he is enjoying it once he gets there but he complains about going. We’ve been chanting “USA” a lot at home watching the Olympics with the babies upstairs. Anna is hooked on the Olympics, so I’m glad I have someone to always watch it with. Ben and Alex had a blast at their birthday party a couple of weeks ago. They got lots of neat stuff and most especially enjoyed hanging out with their friends. We’re really proud of our big boys… they always have a ton of questions, always argue with each other like two cranky old men, but always show us and the babies all sorts of love.

Alex’s funniest/sweetest thing he said to me yesterday: I was dressed up to give a speech in downtown Dallas yesterday morning. While they were eating breakfast Ben asked where I was going and I told them “I have to give a very important speech in front of 1,200 people all by myself!” Ben’s eyes opened real big and Alex closed his eyes. He opened his eyes back up and said “Mami, I’m so proud of you that when I closed my eyes I cried a little.” I busted out laughing, it was so funny and sweet!! I guess he gets that from me because when I’m proud of them I start bawling!

Tuesday, February 16, 2010

Once lost now happily found in search of sleep

Here I am Celebrating Fat Tuesday at the pediatric sleep institute with Dori while Chris holds down the fort at home with the other boys. This time it's to measure Dori's tolerance for a cpap. He hates it and seems uncomfortable but we gotta give this a try to help him breathe at night.
To pass the time I was researching quotes about family on my iPhone and I found one that I first stumbled upon before Chris and I ever had children. And even though I hadn't experienced maternal love first hand, the first time I saw this quote it teared me up. I was so inspired to find it again I needed to share.
"Before you were conceived I wanted you. Before you were born I loved you. Before you were here an hour I would give my life for you. This is the miracle of life." - Maureen Hawkins

Thursday, January 28, 2010

January 2010

Dentist Time for Wynnie
Dori enjoying dentist time
Dori and Wynn dressed up for New Years to hang with bro.

Hoping everyone's new year is off to a great start. Ours is starting off to be a good year with lots of projects around the house, extracurricular curricular activities with Ben and Alex, work keeping Chris and I really busy, and lots of snuggle time with the babies.

After Christmas Dorian started saying DaDaDa and MaMaMa sometimes and just two days ago Wynn surprised us with BaBaBa (which according to Anna, BaBa means grandma in Russian). We completed yesterday our annual review with our team of therapists (we had 2 Occupational Therapists, 1 speech therapist, 1 auditory therapist, and 1 cognitive development therapist present at the evaluation). It was really neat to compare what our goals were for the babies last year -- Dorian met nearly all his goals from last year except turning/rolling over. But he can now eat/swallow without assistance of tubes or feeding machines, he enjoys his bath time instead of crying like he used to, he reaches for toys, he engages and responds to people when they interact with him, etc. Wynn is the show off... he met all his goals for the year. So we look forward to continuing working with our harem of therapists :) Luckily for us they all come to our house and the boys are sweet on all of them except the Occupational Therapist since they think therapy time with her is torture. She's the nicest gal... she just pushes them to do more with their body than what they naturally do (stretches, loosening up joints, bearing their own body weight on legs and arms) and they just scream until she is done.

Today the babies had their second visit to the dentist. He recommended the babies see an oral surgeon about cutting down their overgrown gums to continue allowing more teeth to sprout out instead of them being in a perpetual discomfort of teething. Wynn has two baby "fangs" on his top, and two little teeth on his bottom (it's his homage to Chris & I's favorite show True Blood), and Dorian's teeth are begging to come out but just haven't broken through the gums. Surgery isn't urgent so he said we can wait a few months to have it done. Three dental assistants gathered around the babies and were lovin' on them during the whole visit and saying how they couldn't believe how calm and laid back the babies were. Proud mama and daddy after those comments!!

Dorian last Friday had to participate in an overnight sleep study at the pulmonologist's sleep institute to measure whether Dorian is getting safe levels of oxygen while he sleeps. I spent the night with him and knew all the alarms going off during the entire night were not a promising sign. Normal oxygen levels for people is usually around 98-100%. Borderline is considered 92%. For Dorian he kept dipping throughout the night to 65%, and that is considered severe sleep apnea which is not uncommon for children with constricted airways or facial abnormalities. Our first intervention will be to possibly have his tonsils removed to help free up space in his airway. Second intervention would be to install a CPAP or BiPAP on him. They are basically a face masks or nostril tubes connected to a machine that delivers pressurized air to his lungs. It doesn't breathe for him, but it helps deliver the proper amount of oxygen to allow his lungs to work right. He would only wear it at sleep/nap time. We have to wait until we see our ENT for him to determine the next step with our pulmonologist. We'll be seeing our ENT as soon as we can get a slot in his schedule early next week. We need to fix this very quickly since O2 levels as low as Dorian's put too much strain on the heart and don't provide enough oxygen to the brain to allow normal brain function and development.

On a lighter note, Ben and Alex are doing great. Ben sat down and read us a book about sharks for the first time this weekend. He persistently sounded out every word until he could figure it out, and we were so proud!!! I almost cried!! He really likes writing and playing games on his computer. He likes math and letters games. When he's doing his letters/numbers he announces to us "I'm doing something very important!". Boxing and basketball are going really well for him too. He needs his own iCalendar and chauffeur to be his taxi to all the stuff he does.

Alex is loving having friends over to play, having dance parties with me (he only likes Michael Jackson music), and lovin on his baby brothers. He started science club this semester and he is really excited about that. At least once a week he gets sad and tells me he'll miss me when he's married. I told him I'd still be around and I'd take care of his kids for him, and even cook for him and his wife every now and then. Tonight he almost started crying at Target about it!! I don't know where that's coming from but Chris tells me I'll probably be a slightly overbearing mother-in-law so I'm sure Alex won't have much time to miss me ... ha ha ha!!

Anna will be going back home to the Ukraine to finish her studies and get back to her normal world in April. We have already selected our new au pair, Aury. She is from Barranquilla, Colombia and will be joining us as soon as Anna leaves. Wynn will REALLY miss Anna. When she feeds Dori he insists that she put him close enough so that he can touch her with his feet. If not, he'll scream and holler until she does. Then once Dori is finished eating, then he is happy being anywhere as long as Dori isn't getting all the attention anymore. We think she's his first crush. :)