The Toughest Job....Ever!

I'm sure bankers on Wall Street, CEO's of huge multi-billion dollar corporations and even neuro-brain surgeons all have very tough jobs. I'm sure they worry and pace, and hopefully probably even pray before taking that next huge step.  

But, this Mama knows the facts, the truth.  There is NO job on the face of the earth that is harder, than being a Mama.  Nothing.  Hands downs. I'm thinking God knew Adam wouldn't have the necessary grit and tenacity to become a Mama, not in the physical sense, but in the emotional sense, that's why he sent him off to work.

Gosh, how I love this silly boy!

It's been quite a while since I've updated on our precious China man, Kai.

We've not quite experienced anything like we did during THIS time period. But, we did have a bit of a scare with his apnea issues last year, where he had to be taken into emergency surgery to open his airways, after he stopped breathing in a previous surgery two days before, getting new tubes in his ears.

Our new doctor in Charlotte is world renown and came highly recommended.  We feel we are in good hands.

Since we arrived in the Promised Land, Kai has been seeing his doctors, and the orthodontists have been working diligently with him to expand his jaw, all in preparation for the the highlight of every child born with a cleft palate, the scary and extremely painful  ALVEOLAR BONE GRAFT surgery. 

My heart aches for my boy.

  

Let me back up a bit.  

It amazes me how "in-tune" I am to this child. I knew he wasn't hearing well again.  I took him to the ENT and sure enough, tubes are out and new ones need to be put in.  His eardrums are flat against the bone because they have no ventilation.  Only problem with this 'routine' surgery is that the last time, his left eardrum was perforated.  It was repaired with a paper patch, as they call it.  The patch held.  The perforation occurred  because of the many sets of tubes he's had put in.  It's worn down the lining of the drum and it is thin and fragile.  The only remedy to revert his hearing again to normal is.....another set of tubes, and the risk of yet another perforated eardrum.  If that happens, we may not get so lucky that a patch will hold and it be repaired.  I'm leaving it to God. 

Have I mentioned that my heart aches for my boy?   Just checking.

God's precious child!

The ENT wanted me to check with his surgeon to make sure he didn't need any other surgeries at this time, so he wouldn't be put under twice.

That brings us to today.   We went to visit his surgeon.   I explained what the ENT had said, and also mentioned that the orthodontists (who had already faxed him their opinions) felt his jaw had been widened enough for the bone graft.  After a thorough examination.  He agreed.

So, we head for our 13th and 14th surgical procedure, his 9th myringtomy (tubes in ears) and the infamous Alveolar bone graft.  

Now here is where I once again claim that being a Mama is the world's toughest job.

I asked the doctor to tell me the procedures and recovery for the bone graft.  

He said that bone for the graft could be accessed from three sources:

• Allograft - cadaveric "living" bone obtained from a bone bank with added stem cells

• Autologous - bone harvested from his own body which could come from either the hip (iliac crest), or the skull (if the hole that needed to be filled is very large).

I asked what the differences and pros and cons would be.

He said pros were the obvious, which is to provide support for the lip and nose, improve symmetry (although his nose will be another surgery in the future), and form a continuous upper gum ridge for adult teeth to adhere to and grow from.

He said the cadaver graft would obviously not have the pain as harvesting a bone from his own body, but he only uses cadaver bone when it is not a large hole he needs to fill.  In addition, doing the cadaver graft he would only need to remain in the hospital one night, if there were no complications.

Then, I asked about the cons and how he would determine which graft he would use for Kai.

He said he would not know until he was in surgery, and looked inside to see the depths and width of the cleft, how much bone or what type of graft he would use.

Number 1 con for the hip or skull, "Pain!"   I asked how long would the pain last, and held my breath hoping to hear, "a day or two".   He responded with, "Two to three weeks."   The surgery would last approximately 5 to 6 hours, and his hospital stay would be 3 or 4 nights, possibly longer, depending on how he does.  He would then be out of school for another week after that and be on liquid/soft foods for 6 weeks. 

He also mentioned that he would need at least two more surgeries to correct his deviated septum and move facial muscles around that will allow for easier breathing, since his palate deformity was pretty severe.

Bless his sweet heart, Kai loathes missing school because of the makeup work.  I told him we'd deal with it.  Honestly, I think we have bigger fish to fry at this time so I'm not gonna stress over it, not to mention that he has amazing teachers that will no doubt, work with us.  

After being told about the autologous grafts, I really almost felt like asking nothing else when he emphasized the pain from the hip.  I felt like I had been punched in the gut.  

I then went to check out and asked when someone would contact me about the surgery.  They told me, of course, that they had to speak to the insurance company (which is a whole other story since we are thousands away from meeting our insane deductible), and then coordinate with the ENT a surgical date.  But, she was clear to say that we are not to expect anything for at least TWO MONTHS.  I said, "Months?  TWO MONTHS?"  The girl said, "Yes, we have approximately 45 children waiting to be put on the schedule for surgery."   ::sigh::   

So, we are looking at the end of April, possibly May before all this occurs.  I remain steadfast on the fact that God's timing is perfect, so I didn't question it, or try to push for an earlier date. Besides, I was still numb, thinking about my skinny, little guy who will be crying in pain.  I have seen that sweet face beg me to stop the hurt after a surgery, and have felt completely helpless. But, I have also seen God perform miracles right before my eyes, when I begged Him to take the pain away.

It's hard to explain, unless you've been through it, how difficult it is to see your child go through surgery after surgery, and yet....we are SO blessed.  God has taken such incredible care of us.  He has never, ever failed us.  It took me driving home, shedding a few tears, hugging my husband and claiming over and over how I wish I could be the donor, for me to realize that yes, while this is another surgery for a little boy that has been through more than any child should go through, HE IS HEALTHY!

I thank God from the depths of my soul, that I could say those words.  I have friends with children that have terminal diseases, with children going through their second rounds of chemo, with children in wheelchairs that will never know the joys of running through a field or racing down the street.  I. WILL. NOT. COMPLAIN.  

My heart hurts for my boy.   Yes, it does.  It tears me up that he is going through yet another painful surgery, but he is tough!  He is resilient!  He has a great surgeon that knows what he's doing and truly cares for the children he treats.  

But most importantly, my precious little Kai has a Savior that loves him and that will never forsake him.  A Savior that is indeed the Great Physician.  A Savior who has guided every surgeon's hands that have ever been placed on this little boy, and a Savior who knows what is best for all of us and we could blindly trust.

So, while I may have the toughest job on the face of the earth, I will do it daily.  Gladly.  Joyfully, for no monetary reward.  The smiles and joy in the faces of those precious babes God entrusted me to care for, is worth every single tear and pang of pain in my heart.  My greatest gifts came in the form of six little bundles.  

Isn't he the sweetest?

We covet your prayers for both his ears, and the easiest, less painful and successful bone graft possible. 

This Mama thanks you from the bottom of her heart.

 

A Do-Over: Chinese Royalty Visit Local Park

**This post was written for the photography blog, so for those of you folks that have already seen this, my apologies.

Lately, I've been struggling about how to add more hours to my day. Life is so crazy, busy at the Bombardier household between school, work, and play that it's getting tougher and tougher to keep up with my old therapeutic buddy, my blog.

So, I thought I wouldn't keep you waiting any longer and would post a few pics from one of our visits to the park the other day. These two little critters make me smile....A LOT! I'm sure they'll do the same to you.**

After running errands with the Chinese Royalty, they begged to go to the park.

Knowing that they could definitely use the release of some energy, I obliged. Not to mention the fact that I, of course, had my camera with me and what a better opportunity to take pictures than at a park with two of my babes.

So, they jumped,

and they swung,

and they slid,

and they climbed.

They played games,

and they giggled.

They took a candy break.

and like all siblings, had to compare whose tongue was greener and whose lollipop was licked the most.

Then they tried to decipher graffiti ancient Hieroglyphic writings.

It was an afternoon filled with fun...

and love.



What a perfect way to spend the day!

It 'just happens' to be that God gets the glory

Have you ever had a miracle occur in your life? A real, true-life miracle? You know the kind, the ones that you know could only come from God. I am blessed to say I've had a few. Today, He revealed Himself in a big way. Front and center.

Today's post was intended to be about Kai and an update to his medical situation, but it's not.

Really. It's much bigger than that.

It's about God's immense faithfulness when His broken children fall apart and land at His feet.

I do know that this post will end up being a bit long because of all the detail, and I apologize for that in advance. I intentionally enter every detail I can remember, not only to show how God deserves every ounce of the glory, but I also do so for myself. During tough times when I find myself wondering where He is in my life because I don't feel His presence, I go back and read these blog posts and it immediately brings me back to Him, to the Truth.

I hope you do end up reading all the way through to the end. My prayer is that as you see how God revealed His glory to me, He will do the same in your life.

Okay. 'Nuff of the Foreword.

Here's what happened:

Back in June, I took Kai to visit his cleft team. The group ENT (which we don't see with the exception of the yearly cleft team visits) looked at his ears and mumbled something about the tubes being out and that he had possible fluid in both ears. He then sent him to the audiologist for testing. The results were that his ear drums were "flat", meaning fluid and that he had some hearing loss in his right ear. That worried me a lot. Kai has a lot of scar tissue built up inside his ears from four prior tube surgeries. The last thing we wanted to hear was that he needed another set of tubes.

At that visit, I asked for a referral to see an ENT that had been recommended to me in Tampa (about 2.5 hours away). The pediatrician of the team gave me my referral and we were done for the day. A few days later, I set up the appointment with the new doctor. The soonest appointment they could give me was for today, October 27. That meant we had to wait 3 months to get in to see her.

I've been trying so hard to give my control issues to God. I figured He wanted this time for me to pray for Kai, which I of course have been doing.

This morning finally arrived. We headed out of the house shortly before 7:00 a.m. for our 10:00 p.m. appointment. I wanted to give myself plenty of leeway in case of traffic, etc.

I had my Mapquest (yes, I'm one of the few people in the world without a GPS) papers right next to me and all seemed fine when I got off at the exit that would lead me to the office. After about 20 minutes of driving, I realized I was totally lost. It was 9:55. I was very nervous. I pull over, call the doctor's office and tell them. The girl gives me directions and tells me that I need to be there soon because if I am later than 15 minutes, I would need to reschedule, regardless of the fact that I had been driving 3 hrs. to get there. I was about 5 miles away.

Finally, with sweaty palms, I walk into their office at 10:10. I check in and give them all the corresponding paperwork. The girl says to me, "I need the referral, please." I point out to her the doctor's referral that I had just handed to her and she says, "Thank you. Please be seated."

Fifteen minutes later, what seemed like a very harried nurse opens the waiting room door and calls Kai's name. We immediately get up and follow her into a small triage room. She turns to me and abruptly says, "I need the referral papers." I responded with, "I gave them to the girl out front. I believe they are in the file." She quickly flips through the pages of the file she is holding and as soon as I saw it, I said, "There! That's it!". She said, "No. This is the referral from the doctor. What I need is the case authorization from his caseworker at the insurance company." I said, "Why didn't anyone tell me this? I've been waiting for almost 3 months for this appointment." Sounding perturbed she responded with, "We couldn't get a hold of you."

So, I take a deep breath. I then said to her, "This is his caseworker's name and number. Can we call her now and she can get you what you need?" She said, "Yes, I'll try that but we can't see him until I have that, so go back to the waiting room." I then scoot my kiddo out the door again and we sit in the same chairs hard chairs.

Thirty seconds later, she appears again with a scowl look on her face. She said, "I called. The caseworker is on vacation, so we'll have to reschedule." I looked at her and with hesitation said, "Wait. Can we call someone else? Please? I've been waiting for almost 3 months and just drove 3 hours to get here." She said, "I can't call because it's very busy here. I'll give you 15 minutes. If you can't get me the paperwork within that time frame, we will have to reschedule." She turned her back and walked away.

I sat there in disbelief, almost on the verge of tears.

I immediately dial the caseworker's number. Sure enough. Same message. She was out for the week. I left her a voicemail with the hopes that maybe she might call in, by the Grace of God, and get it. I then remembered that her office is in the same office as Kai's pediatrician. I call the pediatrician's office and explained the situation to the receptionist. She reiterated that the caseworker was out of town and unfortunately, she was the only one that could fill out the required paperwork. She then said, "Here is the number for the main office to the insurance company. Call them and see if anyone there can help you."

In the meantime, the clock is ticking.....fast.

I dial the insurance company's number and explain the entire situation to the lady that answered. She puts me on hold and comes back only to tell me that the caseworker is the only person that could assist me because she has Kai's file and she is the only one that knows it.

I was beginning to feel desperate. I ask to speak to a supervisor.

A soft spoken man picks up the phone and almost in a whisper says, "May I help you?" I spent two of my precious minutes explaining again the entire ordeal to him. The harried nurse had already walked by glancing at me and then up at the large clock on the waiting room wall.

The supervisor repeats the identical response that the previous girl had already told me. By then, by bottom lip was quivering and my eyes were welling up. I couldn't believe they weren't going to see Kai. He then explained further that because of his "special needs plan" it is the caseworker's responsibility to follow up, blah...blah...blah. His explanation was followed by asking me why I hadn't called earlier if I had made the appointment 3 months before. At that point, I just repeated, "I didn't know. I didn't know." I thanked him and hung up.

I look at the clock. Six minutes before I'd reach the final countdown. I knew I was going to start bawling, so I quickly glance towards the receptionist and without giving her eye contact said, "I'm going to my car a minute, I'll be right back."

I grab Kai's hand and almost run across the parking lot to my car. Once inside, I fell completely apart. I started wailing to God as I buried my face into my hands. I yelled, "Lord! I don't understand! I've been begging you for months for him to be okay. I thought that's what you wanted from me. I've been praying fervently for my little boy! For him not to need any further surgeries. For him not to have any hearing loss. Why God? Why? Why are you not even allowing him to be seen by the doctor? Why did you drag me here? Lord, please intervene!" I sobbed uncontrollably.

I look at the clock on the console. There were three minutes left.

I had resigned myself to the fact that now I would have to reschedule and probably have to wait another 3 months, especially during the busy holiday season coming up. I sat there for another second, sniffling and trying to regain my composure. I then thought, "I'll try once more. Maybe I can soften this supervisor's heart. After all, he's a supervisor. He should have the authority."

So, I redialed the number. A new girl answered. I tell her I had just spoken to someone regarding my son and ask if it was possible to speak to her again. She told me they have over 50 operators there and it would be impossible to know who I spoke with. She then said, "How can I help you?" I, for the 4th time, explained the entire story, ending with wanting to speak to the supervisor. The woman answers me by saying, "Mrs. Bombardier, I'm sorry, but you apparently just spoke to him 5 minutes ago and he explained why he couldn't....." and then she stopped speaking. There was silence on the other end. Just as quickly as she had stopped, she said, "Hold on a second, please."

I waited for what seemed like an eternity, since I was pretty much out of time. Yet, something inside of me told me not to hang up.

After a minute, she gets back on the phone and says, "Today must be your lucky day!"

I was confused.

She then said, "Donna, your caseworker, just happened to walk in to the office. She apparently left something in her desk before leaving on vacation and she stopped by to pick it up."

I literally yelled, "WHAT?" I knew things don't "just happen". I knew that was God! Even after I doubted him, even after I questioned him, He remained faithful. I suddenly became lost in Him. I almost forgot the woman was still on the line. She said, "Mrs. Bombardier? Would you like to speak to her?" In between praises and sobs, I managed to muster a "Yes, please!"

The caseworker gets on the phone and says, "Hello?" I was already on my way back into the waiting room, oblivious to the smudges of mascara covering my eyes. I was crying and rambling off a-mile-a-minute. Through sobs I said, "Donna, please. I need your help. I'm out of time. They would only give me 15 minutes and I'm out of time."

The poor woman must have thought I was nuts! She said, "Slow down. How can I help you?" I took a deep breath and then said, "I drove 3 hours to get to Tampa to bring my son to see an ENT. I've been waiting 3 months for this appointment and they are telling me to reschedule because I don't have some paper they need from you." She asked, "The case authorization paper?" I said, "Yes!!!" She quickly responded with, "Tell them it will be there in 2 minutes. I'll do it right now. You just happened to catch me here. I'm on vacation this week!"

There were those words again, "just happened".

I thanked her profusely (in between the many thank you's to Jesus) and hung up. I turn to the nurse and staff that had seen this crazy mother go over the edge right before their eyes and said in as calm a manner as I could come up with, "That was the caseworker. The paper will be here in 2 minutes thanks to God!" and I plopped myself in the chair next to my boy who had a bewildered look on his face. I felt like I had defeated Goliath. God had orchestrated it all. Had I not been late, I would not have called when she was walking into the office to pick up something. Had I not attempted to call back and try to soften the supervisor's heart, I would have missed her. Every second of every incident was a piece of the puzzle. He amazes me!

Immediately we were taken back to a room.

In addition, God's faithfulness did not end in just getting us in to see the doctor.

Kai's "hearing loss" was due to a ball of wax the size of a small pea, wrapped around the tube that had already come out. It was pushing against his eardrum, therefore impeding his hearing. She removed it and took him back to have another hearing test done. Both his ear drums were perfect, meaning absolutely no fluid and his hearing was normal. No need for further surgeries!

Furthermore, the final prayer was to see if we could get a diagnosis as to why he can't breathe out of his nose. God answered that one also. We received a diagnosis from a cat scan done 2 weeks ago, which I "just happened" to take to her today. He has a pretty deviated septum, but she said she's definitely seen worse. She doesn't recommend surgery until he finishes growing because bones and facial features change during growth.

We have a sleep study scheduled for next week and if that if the results of that are reasonable, there will be no further surgeries in my sweet boy's future for at least a couple of years until his bone graft is due. At the end of November, we go visit Dr. Hero.

What an awesome, sovereign and merciful God we serve!! The cries of His children never fall on deaf ears. Thank you, Jesus for loving me in a way I will never, ever understand!

Four years ago today...

our lives were transformed. On a cold morning in a Civil Affairs office in Hangzhou, China, a teeny tiny little boy walked into our arms and never looked back.

Seconds after meeting our angel for the first time.

Kai, you have brought us more joy than we ever thought was possible. Just when we thought we couldn't love you more, our love blooms again and we find ourselves submerged in complete "Kai-ness bliss".

And we wouldn't have it any other way!

Happy 4th Forever Family Day, sweet boy! We love you as much as the whole, wide world...and back again!

For those of you that weren't there to share that magical moment with us, you can click HERE to read about the emotional rollercoaster we went on.

Our little man and with his very proud Mama right before leaving, earlier this week, to our first Mother/Son dance at school. ::sigh::

do you think...

that if maybe, I were as cute as this little guy, and I brought you a rose, you could pretend like it's not true that I haven't been on here in over a week?

Yea, I know. I don't deserve it.

But I got excuses. Lots of 'em. Some are pretty lame believable, too!

Like the night before Thanksgiving, my little man, Kai, had his third sleep study this year. Yep. He sure did. And we all know that's true, 'cause I'd never fib about my kiddos. I'll even share the results with you. When I get them that is. Oh, when is that? Waiting for them to call me to tell me that the results are in. So, we still have time left to pray that his OSA (obstructive sleep apnea) is thing of the past. Although, to be honest, he's been snoring a lot lately and having full-blown conversations in his sleep at night, so I don't think that's gonna be the case.

Then, there was Thanksgiving, albeit nowhere near what our traditional Bombardier Thanksgiving is like, it was very nice and quaint. We had almost all the fixins' we usually have and they were just as delicious. Lots to be thankful for.

Hmmm....what else? Oh yes.

We took another 200 mile each way trip to Shriner's Hospital. Anna Grace still has one more surgery left on her little hand with syndactyly and I was praying hard we could schedule a date during our visit. Alas, it wasn't in the plans. You see, one of the two fingers we were hoping to separate is still pretty small. The Dr. described the bone to be as thick as a pencil lead. With it being so thin, there may be a risk that the blood supply to that finger would not be enough. If that happens and the finger dies, we'd have to amputate it. So, we decided to put her on the "non-emergency" waiting list for surgery. What does that mean? That means we'll be called sometime in the next 11 to 12 months to schedule it. She was bummed. I was bummed. But we know that the best thing to do for her is wait.

I also had Anna Grace and Kai's annual individual education plan (IEP) meeting at school. They're both doing great. Anna Grace no longer qualifies for speech services, but will continue with language and occupational therapy for the next year. As to Kai, he's also doing very well. We'd say he's probably 80% intelligible in speech now, and although he still needs quite a few years ahead of him, he's moving right along with all the other kids that don't have any special needs.

I've also been working hard at the homeschooling with Amanda. We've now settled into a routine and I'm loving the extra time I spend with her. She's got it down pat and is taking four honors classes, along with 2 electives. She studies hard and it's reflecting in her grades (all A's so far!)

Last but not least, Mr. AJ. Oh yea, the boy's got me wrapped around his finger. I am thinking about starting preschool homeschooling for him in January. He's very anxious to learn and I think he's definitely ready for it. I guess I've been putting it off because my last baby starting school would mean that I have no more babies. ::sniff:: But I know I can't be selfish and that there are wonderful stages of growth and learning at every age.

So that's about it. Now that I've caught you up, I promise to be on here more often. I have lots more to share including my new super-duper, leap into the world of technology and our Christmas plans. Pictures full of cuteness coming soon, too!

I miss my blog! I miss my friends! I miss my friends' blogs!

It's time to get back to my new normal life!

P.S. Thank you for all of the emails from you wondering if I'm okay. I am. If I have not responded to your email yet, I will. Soon. Very soon!

Another "AJ-ism"

Kai (as he is shoving his way into the car, he expressed his new learned word "cutting") : "AJ...you can't be cutting people in line!"

AJ (proceeding to push past Kai) : "You can't glue people in line, either!"

germ-a-palooza

Anyone interested in coming over to play?

All three kids (Amanda, AJ and Anna Grace) are being treated for Swine Flu and for Strep. I have a counter covered in meds, 12 different bottles at last count, which included Tami-flu (which is in short supply here and we ended up going to 3 drugstores), antibiotics, Tylenol, Motrin, Cough Suppresant, and nasal decongestants.

Somehow, by the grace of God, Kai has been spared, although he has his own collection of meds he's taking. I picked him up directly from school yesterday and delivered him safely to the germ free haven of Po-Po's house. (Thank you Mom for again being my angel. I know how hard it is for you to drop everything to take care of a little one, and you do it without hesitation. I love you!) I am praying to God that he shows no symptoms later. The doctor discussed with me that if he does get it, he will immediately be hospitalized because of his severe apnea.

At first, I thought, "this isn't too bad." But oh my word,

I. WAS. SO. WRONG!

My babies are so very sick. I've never experienced a child with such a wicked, horrible cough, especially AJ's. Poor baby turns beat red and can't stop coughing. I'm talking for hours on end. Cough suppressant does absolutely nothing. His lowest fever has been 102.2 and it's spiked to over 104 last night. I had him in bed because I was afraid of it spiking and my not realizing it. He coughed all night long.

At one point, in the middle of the night, he shattered my heart when he looked at me with his sweet glassy eyes and said, "Mama, I'm sorry I wake you up."

Anna Grace is not too far behind. Her temperature has dropped into the 101's and her cough, although bad, is not quite to the extent of AJ's. They are both wearing their masks and are in separate rooms laying down watching TV right now. She is a trooper. That little girl's resilience will get her so very far in life. I'm so proud of her and love her so much!

Lastly, my big girl, Amanda. Amanda, the first one to get sick seems to be a bit better. Although she's obviously not completely 100% there yet, she now has only run a low-grade fever and her cough has subsided a bit. Fortunately, she has everything a teenager needs, and it's all in her room, so she comes out of there only to go to the bathroom. She's barely eaten in 3 days but I'm making sure she keeps fluids in, as the other 2 little ones are.

As for me, although tired, I have physically felt better than I have in the last two weeks. I continue to be on my own antibiotics for Strep. But no signs of the flu.

Please, please continue to lift our family up to our loving Father, praying specifically for the following:

1) Complete and quick healing for the kids at home that are so sick.

2) For Kai to continue to be exempt from all of this and for complete recovery from his Strep that he is on antibiotics for.

3) For neither Scott nor I to get this terrible flu. We would both without a doubt be out of commission with fevers so high. My babies need me to care for them and Daddy is our sole provider.

Thank you my dear friends and prayer warriors. May God bless you abundantly for your prayers.

We continue to praise Him in the storm.

here we go

Back to school again.

Although I have lots to share about our NY trip, including a big scare on the subway, a 10 hour trip home and tons of pictures, I just couldn't pass up on sharing this morning's events, cuteness and goodbyes.

They're growing so fast. I miss having them home.

I can hardly believe my big boy is in kindergarten this year!



My girl was all smiles leaving the house and ready to go to her last year of preschool!

OK. I know. I'm biased. But aren't they full of sweetness?

After arriving at school, we headed off to drop off Kai at his classroom first. Since we were out of town last week, we missed Open House so he hadn't had a chance to meet his new teacher. I was anticipating he'd be nervous. But nope. He walked in after saying, "Good marnin" and found his name on his desk. Quickly he settled in and before I knew it, he was saying, "Bye Mama". I was really a bit anxious about whether or not his teacher would have enough patience to understand him, but calmed down soon after meeting her. She seemed very sweet. I hugged my big boy with a quivering lip (mine not his) and allowed my tears to be dried by his shirt as his little arms wrapped around me. He sweetly said, "It's OK, Mama!" Then he kissed AJ and Anna Grace goodbye and we were off to drop off Anna Grace at her PK class.

Anna Grace is blessed again this year to have the same wonderful teacher she's had for the past 2 years, so I thought it would be easy for her.

Wrong.

Although I tried to explain to them over the past month that Kai and she would be in different classrooms now because Kai was going to kindergarten, I guess it didn't compute. Her entire demeanor changed the second she realized she was not staying in Kai's classroom. I lost all eye contact and she would not respond to my questions. We talked, or shall I say I talked, for a bit while we were alone in her classroom waiting for her teacher, but she had that you-betrayed-me look in her eye. Shortly afterwards, more kids started coming into the room as well as her teacher and the teacher's assistant. The teacher asked Anna Grace about vacation and after some nudging she reluctantly responded.

AJ hopped out of his stroller and went to play and Anna Grace soon followed. She was a bit more at ease. I called her over and asked her for a hug and kiss goodbye. She swung around with no eye contact and sighing heavily said, "OOOO-KAAAYY". She allowed me to kiss her and hug her, but did not show much emotion. Change is hard for her. She's been home for two months and was adjusting after a rough beginning at home, now we're back to school. I think she'll be fine, but it's a process and she has to again learn to trust that school is not a "permanent home". By the time I left, she had gone back to playing.

We swung around to Kai's class once more and he happened to glance out the doorway just as we walked by. A huge grin spread across his face as he shouted, "Hi Mama!", blew me a kiss and quickly began coloring again.

They grow so fast.

Where did all my babies go?

WHITE MAN WALKING!

The funniest thing has emerged from our visit to NYC.

Before I go into what has transpired, I want to remind you that my children are used to going everywhere in a car. We don’t walk in Florida. It’s just something that’s not done.

All this walking and taking trains and taxis is just plain cool for them.

On our very first day here, I wanted to make sure that the kids knew how important it was to be careful in the big city. I explained to them that not only were there thousands of people walking the streets, but that there were cars, buses and trucks coming from every which way.

When we approached our first street corner to cross, I pointed out to them that you need to look at the sign across the street from you. “If there is a red hand, that means you need to STOP. You cannot cross the street. If there is a "white man walking", then that means that you can cross the street.”

Immediately they caught on to when it was safe to cross. The only problem is that wherever we are, when the walking signal changes, Kai yells out at the top of his little lungs, “WHITE MAN WALKING!” to assure us all (bystanders included) that it’s safe to cross the street.

Now, after 5 days of listening to him proclaim his new found wisdom (at every street corner and trust me, we walk miles and miles daily) the other two little ones have caught on. There's rarely a street corner we stand on that people don't turn to look at us when they hear, "White Man Walking!" The funny thing is that now sweet hubby and I have both caught ourselves telling them it's time to cross the street when we see the "white man walking" sign light up by yelling out, "Let's go! White Man Walking!" as we quickly move them along.

Therefore, don't be surprised if you happen to be standing on a street corner in Manhattan and you hear high-pitched little voices yelling, “White Man Walking”. It's vital to remember that these little people are not saying this in the same context as “dead man walking” and they certainly are not engaging in any type of racist comments.

Instead, our sweet children are just three concerned little preschoolers advising all around them that it is now safe to cross the street.

P.S. Since some of you have asked, still no sightings of "The Man" ::sniff::

breathe...breathe....

As you know, we celebrated my birthday last week by going to the Kai's pulmonologist/sleep doctor.

Back in March when Kai had his first episode of OSA (obstructive sleep apnea) and had his first sleep study, the results were pretty devastating. His RDI or Respiratory Distress Index (basically how many times he stops breathing per hour!) was 74.5. Yes, that night in PICU the average times that he stopped breathing in his sleep was 74.5 times per hour! Many times over 90 seconds and once over 120 seconds.

His Oxygenation Desaturation, de-sats for short, were down to the high 60's. This means that he only had 60+% of the necessary oxygen in his system. A child should never go below 94.

I was anxious to see what his results were this time, to see if the two back-to-back surgeries had been effective and to see if further intervention would be required.

The results weren't what would have made me jump for joy and skip down the halls, but they were much improved.

On July 17, he went back for his second sleep study. His RDI that night was 5.1. This translates to his body ceasing to breathe an average of 5 times per our. Still very scary (especially when the doctor reaffirmed to me that a child under 15 should be less than once an hour, if that) but a vast improvement from the prior sleep study.

His Oxygenation Desaturation only went down below normal levels once. It went down to 89, but it lasted 73 seconds. Over a minute! Still scary, but again, a vast improvement.

It was also noted that all Apnea Hypopnea (apneatic episodes) occured while on his back and throughout the entire night, not just during REM sleep which is when they had anticipated it was occuring.

So, you may be asking where do we go from here?

These were the options:

1) Go back into surgery and take down the flap to remove the final obstruction. (This may greatly affect his speech, since it would now allow air back into the nasal cavity.)

2) Have him sleep with a CPAP (continuous positive airway pressure)machine on. This option was attempted several times while in the hospital and he just couldn't tolerate it without sedation. Basically what it does is it delivers a stream of compressed air via a hose into a mask, splinting the airway (keeping it open under air pressure) so that unobstructed breathing becomes possible. They had me try it at the hospital and it was scary for me. It felt like when you are riding in a car going 60 mph and stick your head out the window. Great for dogs. Not so much for little boys.

3) Being that all of his episodes happen while he is laying on his back, configure a way to keep him on his side or on his tummy and then give him time (maybe anywhere between 1-5 years) for his body and airways to continue growing, thus enlarging the spaces of his airway passages.

The doctor's suggestion to my relief, and what I was hoping, was option # 3. He does have to be monitored by all teams of doctors (cleft, ENT and pulmonologist) every 3 months and needs to have a sleep study done every 6 months to ensure that his organs are not being affected by the interruption in his sleep/breathing cycle. His little heart is very strong and his EKG's have been perfect. Praise God!

So, while not critical, he remains under guarded watch.

It would make this Mama's heart feel good if you could please continue to keep my sweet little man in your prayers and his little airways expand large enough where breathing would no longer be an issue when he sleeps.

Any sign of congestion (as he has now!) could mean another rush to the ER and a possible option # 1. But, I'm not going there! I'm trusting God is in control and my precious treasure has a hedge of protection surrounding him, along with many angels, saints and lots of wonderful prayer warriors lifting him up!

Thank you!

birthday wishes are dreams come true

There's no greater wish I would like than when I take my little man, Kai, to the doctor to review the sleep study result today, for him to say to me, "His results were excellent! NO apneatic epidsodes and NO de-sats!" Oh yes, that would be the greatest birthday gift ever!

Wanna help me make that wish as I blow out the candles (Ahem...a lot more than the five in the picture) today?

he did "GOD-MAZINGLY" well!

I arrived, in PJ's, at the hospital at about 8:00 p.m. (I thought it was kinda silly going out in PJ's!)

While Mama and I waited to be called in, Mama told me that nothing soothes the nerves better than a playroom. She was right!




It started with a little sensor here...




and a little sensor there.




During the scary parts, I'd close my eyes.



Pretty soon, I was all hooked up.

Well, almost all hooked up. They wrapped my head with some blue stuff...



then put some tube I didn't like inside my nose and some more wires on my fingers.




Finally,the man said we could say our prayers and it was time to go to sleep.




Mama was so proud of me! She told me that I was so brave because Jesus and His Mama and angels were there with me. I asked her why and she said because she had asked lots of friends to pray for me to be brave and for everything to be okay.

It worked! Thank you to all of Mama's friends for praying for me. It did the job!

I was really, really a big, brave boy!

Love,

Kai

sweet memories with just a lil' bit of bitter

We love this boy SO very much! Words could never express it.

On a warm summer afternoon, three years ago today, we walked into a courthouse in Naples, Florida carrying one of the most treasured gifts God has graced us with, our then almost 4 month old youngest son, AJ.

Minutes later, we stood before a very kind judge who proclaimed that Arthur Joseph, a/k/a "AJ", was our son in the eyes of the courts. In our eyes, he had already been our son, for many months prior. It was a great feeling to walk out of there knowing that the little boy who we fell crazy in love with on March 22, 2006 would forever be ours!

All ready to leave to the courthouse.

Happy Forever Family Day, my sweet baby boy! Our entire family is blessed beyond measure that you are in our lives and I thank God every single day for making it happen!

HE'S OURS FOREVER!

Now for the lil' bit of bitter...


Kai is once again being admitted tonight into the hospital. BUT....it's only for 1 night in order for him to have another sleep study performed.

Two weeks ago we went to visit a pediatric sleep specialist/pulmonologist. I took the reports of his first sleep study. To say that the man turned white when he saw the results is an understatement. Besides blurting out, quite loudly I might add, "OH MY GOD!" when he first opened the folder and read what was on the pages, he ended wth "It's a miracle this little boy is alive!" I knew that.

KAI. IS. A. MIRACLE.

God's fingerprints are all over this little boy.

So friends, I ask you to please lift him up once more tonight. As in the above picture from his previous sleep study, he will be covered in sensors from head to toe, along with some very uncomfortable straps. He's been through so much that telling him that he's going into the hospital again, even after reiterating the fact that there will be "no needles", sends him into a place filled with anxiety. He hates hospitals and has every reason to. I will, of course, be with him all night while Scott holds down the fort at home.

Specific prayers:

1. That he no longer de-sats (or at least minimal de-sats so that intervention is not required; i.e. another surgery, c-pap) during the night.

2. That he be at peace as we settle in and while they prepare him for the study.

Thank you again, from the bottom of our hearts, for your prayers! Results for the study take approximately 4 weeks. (ugh!)

I will not be taking my laptop but I will be posting an update tomorrow.