2010

2010 in numbers
11 trips to the ER
4 ambulance rides, I,K,K
9 admissions: I,I,K,I,K,K,I,K, I
28 nights
4 different hospitals: Elliot, Boston,Franklin Memorial, Roanoke Memorial
1 scheduled surgery (I's triple scope, ear tubes)
1 unplanned surgery (I's central line)
111 medical appointments, 2 for Morgann

phew.

Snapshots of a day...five months later

Do you ever look back and have like a snapshot of yourself? Well, five months ago, K was at Elliot. He was sick. Not too bad - but just bad timing. We were supposed to leave for SC the morning he was admitted and I sent Rich and Morgann on to SC. Our friend Diana took Mr. I. I took the ambulance to the hospital. It was one of our ER all nighters. I was EXHAUSTED and emotional. Very very emotional. Did I mention I was tired? So Dr. Crazymaniam of another hospital was stirring up stuff with the Health Dept and with Elliot. (Once again, she was WRONG!) So on top of Rich being gone, having a sick child, having no sleep, and not really knowing where my other baby was, I had Dr. Crazy trying to get K transfered.) I put my foot down and Elliot was awesome and supported us. But I WAS DONE. One of those moments, when you cant do anymore. I couldnt sleep, eat, puke, or think. Though I felt like doing all three. I needed OUT of the hospital. I called my awesome friend Marie, but she was babysitting Mr. I (found him at least!) and another baby and her own kids and they were napping but she could pick me up in an hour or so. I called Kris next. She answered and was able to come to the hospital within a few minutes. I got in her van and LOST IT. Tears and snot and all....totally lost it. Got home. Didn't have keys. So I broke in my own home...nice. I got to the kitchen and just lost it even more. I remember sobbing over the sink. This is my snapshot - me sobbing over the kitchen sink and apologizing to a not present Morgann for not being able to go to SC with her and for all the doctors appointments and stress we put on her over the last year. I don't know what Kris said or did. But she was THERE. Somehow she got me to callm down...and got me to lay down and just breath.. She found care for Mr. I. She helped me find my keys. I dont remember what happened next. Thank you Kris. Somehow Mr. I was delivered to another foster family who lovingly took care of him for a few days. I somehow got back to the hospital - and was sent home by our awesome nurse Lori, who assured me she would call if anything came up and that K was her only patient and she would stay with him all night. She did and he was fine and he came home the next day.

So here we are, five months later. And we are okay. Morgann is fine. She is happy and loves her brothers. K is doing pretty good minus a runny nose and lots of drooling - darn molars! Mr. I is also doing great and finally doesnt puke everything all the time. Rich is a loving dad of three. And me, I am just remembering what we have been through and so thankful that its been FIVE MONTHS. And its been so worth it. And even if we do have some crisis happen and we are in the hospital again on Christmas. It will still be okay. God is good all the time. And all the time, God is good. In sickness and in health. All the time. Even when I am crazy. God is good.

5 months!!

5 months!! Elliot Hospital, we love ya! But its so good not have been in patient in over 5 months!!

This is HUGE for us.

K hasn't had to have daytime supplemental oxygen since May too. Yay for getting healthier lungs.

Treating Special Needs kids holistically

I have said many times, that I feel so blessed and fortunate to have Dr. O as the boys PCP. She is truly an answer to prayers. I know that their health has improved ten-fold since being seen and treated by her. Part of it was probably just growing stronger and older, but I know the other part is Dr. O. We treated our last ear infection for K with garlic drops. He was better with in 24 hours. No antibiotics required and no repercussions of yeast.

I follow a couple blogs of medically needy kids. They all receive wonderful, loving care. However, I have to wonder, how would these sweet kids respond if they were treated holistically versus using conventional medicine? I wonder if doctors integrated holistic care with the conventional treatment, what the success rates would be? One guy I read about, is resistant to most antibiotics, would grape seed extract work for him? (K and I have both had wonderful success with GSE a few infections ago.) I do realize that it is really uncharted territories. Would even attempting holistic treatment be worth the risk? I simply can't answer that. Though the boys are considered "medically fragile" their level of fragility is minute compared to many of their peers who are seen by the same Complex Care doctors.

We have been antibiotic free since the summer. Yet, we do use conventional breathing treatments daily. We aren't anti modern medicine. However, I do wonder if perhaps we could find breathing treatments that were holistic based and see how they work for the boys. They are chronically congested and nasally. (Though I do remember Morgann being pretty snotty all the time her first few winters, maybe its normal snotty-ness) Colds for us are a pretty big deal. They have a normal amount of colds, however, we have to treat them much more proactively than Morgann who only get a tissue and snuggles.

That said, I am again thankful for the guidance of our doctor and the ability to treat the boys more naturally. (Morgann is still antibiotic free at the age of almost 6.) But, I know if crisis hits again, we will do what it takes to see the boys healthy again - round the clock albuterol, prednisone, IV abx...)For now, I do think our holistic treatment is working well to prevent those events.

Happy Birthday Sweet sweet boys!

My guys turned two!

We had a wonderful birthday party for them filled with friends and family.

Everyone always said 2 is the magic number for their health and development and for the past month or so, it seems to be. They are doing so well. I am so happy to have these little men in our lives.

Another year milestone

What?! two posts in one day??

But another year milestone is today. A year ago, I wrote this. K came home after a nearly-six week stay at Children's Hospital at Boston. I doesn't seem that long ago. A few days before K was admitted, he received DTaP, Prevnar, Polio, HiB & the flu shot. He quickly spiked a fever. He got very junky and had trouble breathing. He got very very sick. (much worse than when he did have the flu in August) We went back to the doctor. They called an ambulance. We went to Elliot. Blood work, IV's oxygen, lots of suction, and chest x-rays. Then the news that his situation was too complex to stay at Elliot and that the doctor in the ER disagreed with the care K was getting at the previous children's hospital we had been discharged from. So he recommended Boston. After a long stay there, they were able to get K his G-J tube, new meds, and a good team of care. We are grateful for his time in Boston. He's a new kid now with his G-J and he is thankful they did another swallow study that showed he could in fact swallow purees. That boy LOVES to eat. I've run into Dr. Katie O'Donnell twice while were were doing outpatient clinics in Boston. She is AMAZED at how far K has come...and that he never had to come back for another inpatient visit!

I know that he may end up back down there sometime. But I know my God is THE God of miracles and healing - and we've seen so much healing in K. It is amazing.

We are also very thankful for our new wonderful PCP who works with us to ensure K has the best care.

Kindergarten

Morgann had a Harvest Party today at school. I went and helped out - how mom-ish of me:) I am very thankful for a beautiful day like today where I could just be "mom". It was so fun watching my little girl be a a Kindergartener. Can I keep her one for a couple of years though? Please?

3 months

We hit a *Big* milestone - we have gone three months with out having a sick inpatient hospital stay! Woohoo! Our previous record was a one month!

Pray with us that we have a healthy winter:)

Lester

Oh Lester.

You must be one of the most tolerant cats in the world.

Or one of the most, well, dumb cat in the world.

But honestly, I think Lester likes the attention.

Morgann and Ajla love to play dress up with Lester. This weekend, Lester was their baby and they spent the afternoon dressing her in onesies, bibs, baby hats and strolling her around.

You are a good cat Lester and a good friend for Morgann and Ajla and all of the other neighborhoods who adore you.

P.S. stop hitching rides in our neighbor's vehichles. They don't like hauling your furry little bum all over Manchester:)

make a wish...or prayer...

So, August 24, our court date came and went....and basically has been continued...to this Tuesday. Prayerfully, things will go well and permanacy will just be around the corner.

Miss Morgann started Kindergarten last week. I am getting used to that new routine. I had to reschedule a bizillion doctor appointments because they all conflicted with Morgann's drop off / pick up. But thats okay. She is loving school.

The boys are great. Having a healthy spell. K is struggling a little bit with allergies. But handling them very well.

Me, I am great. Rich and I had a great weekend away and mom and dad came up to watch the kiddos. We go yearly to a Pastor and Wives Encouragement Retreat. Its always awesome and this year was no different. Lots of great food, fellowship, good teaching and time with Rich. We went fishing/canoeing in the Great North Woods and I caught a good sized bass. :)

More later...maybe I will one day blog regularly....maybe.

So much to say

So little to post.

Ever have a day, when your brain is just fried? I'm sure you have. Today is one of those days. My brain feels mushy and achy. I have lots to say. But no brain.

So yeh, that was deep. Deep mushy fried brain.

One year ago

One year ago.
I was laying in bed taking a nap after work. We had sent our first foster placement home a week earlier. I was still grieving his loss. My phone was in the kitchen. It was a Restricted Caller ID. Amber saw it and ran to give it to me. It was "K" , a placement worker. Twins. 6 months old. Cuddly. One with a feeding tube. We said yes.

We met Baby I a few hours later. Baby K was admitted at Elliot Hospital. I met K the next day at Elliot. I believe that Linda was the nurse on duty. I am sure she would tell you how terrified I was to hold him. How I wouldn't pick him up on my own. (that scary IV and cannula!). I would be lying if I said it was love at first sight. It was a very tough first month. I almost called it quits a few times. But God had other plans. He wanted us to have these boys.

A year later, it is love at every sight. Even when I don't like the sight - like poop, or low oxygen sats. But I love those boys with all my heart. (And of course Morgann too)

adoption

Please keep us in your prayers. We have an important court date coming up on August 24th. We need wisdom and are praying that one of the parties to the case is in a good state of mind on this day.

Thank you!

This one

this one.

he likes to keep us on our toes.

he must really like rides in ambulances.

but he ought to learn that rides in ambulances = lots of pokes, getting a catheter, ouch! and other not-so-fun stuff in the hospital.

for an ear infection.

he could have been on a plane to SC. But instead chose to visit our friends at Elliot.

but I also know: "All things work together for good to them that love God."

And we do.

And we know its part of his plan.

So now we are home again. His ears have been treated by a very strong antibiotic.

His lungs are clear.

We are getting a new pulminologist because of our good friends at Elliot.

Things worked out.

We aren't chilling on the beach in SC.

But this is where I am supposed to be. At home. With K sleeping soundly in the other room. While I watch TV, drink sparkling grape juice and blog.

It all does work together for good.

And much thanks again to Dr. Abrams, who gave me hope a year ago when K was sick. And gives us hope today. And stands by us and advocates for us.

Camping

This past weekend we went camping. Tent camping. The five of us in a tent. Along with some oxygen, a pulse ox, our feeding tube set up, and nebulizer. And guess what, we had a blast! The medical stuff barely got in the way and K was doing so awesome. He has been so healthy lately.

It was foster care appreciation weekend at Jellystone Park in Ashland NH. I thought that Jellystone would be completely cheesy for camping - but it was so fun and located on a pretty river. Plus, I am pretty sure they spray for mosquitoes - it was nice camping without slathering in OFF! and only getting two bites. (When we unpacked at home, I got about 4 four bites!) Morgann had an awesome time. She loved the splash park and the pool and swimming in the river. I enjoyed just sitting quietly under our canopy while the boys slept outside, by the river. It was serene.

Much thanks to Jellystone for the free campsites. We will be back:)

The start of Summer

Ahhh, Memorial Day weekend. What a lovely break and start into the summer. Splashing in pools, cook outs, fishing, baking pies, long walks...it was refreshing:)

Three in a row

Lots of posts!

So my little guy is home and taking a good nap. He basically boycotted sleep in the hospital. He seems perfect:) He's such a little miracle and a fighter.

So we head out on Thursday for Virginia to celebrate the life of Grandma Peggye. She will be missed. I am so glad she got to meet the boys in February.

Miracle?

After my last post, I fell asleep until 5:45 a.m. and texted Rich at the hospital. K was doing really well. No fever and happy. I later joined them at the hospital and got the whole story. So K threw up as soon as they got in the ambulance. His chest X-ray looked okay and all they could find was an ear infection. His WBC was 29000 which is high - and indicates infection. Here's the crazy thing. My little fighter went from a fever from 106.7 to 98.6 with just one dose of tyelonol - and he threw up within 20 minutes of getting that dose. He did not receive IV antibiotics until later in the morning - like 7 a.m. His fever NEVER came back. I really think God healed that little bugger. Today he seems perfect. Super happy. Great oxygen saturation levels on room air - like 96-98% which is REALLY high for him. He has had two rounds of IV antibiotics and will stay tonight so they can do a third round in the morning - but he is really pretty much perfect for K. Totally unexpected and miraculous. After the ambulance left at 3:15 a.m. early Saturday morning, I completely expected him to be intubated and life flighted to a hospital with a PICU. God had other plans!

Crippling Fear

Tonight I woke up to the familiar beeping of K's alarm. Its not a crisis anymore when I hear it go off. Most of the time, it is a false alarm or has fallen off his foot. Tonight, however, it was the real deal. When I got in his room, both alarms were red - heart rate and oxygen levels. My heart skipped a beat - HR 211, O2 83. A high heart rate always indicates fever for K. I grabbed the thermometer off his dresser and stuck it in his mouth. 106.7. I felt paralyzed. I grabbed the tylenol from his dresser, measured out 5mL and put it in his G-tube. I ran to the kitchen to get water to flush his G-tube and woke up Rich. Found my phone in the kitchen and called 911. Took K off the low flow oxygen regulator and hooked him up to the big concentrator and upped his O's to 3 ltr. That's alot of O2 for my boy. Way too much. He still was satting low. I grabbed K out of the crib and held him upright to try to keep him awake. He started crying. To me, crying was good thing. I stuck my finger in his hand and he gripped it. The paramedics arrived. Whisked him off to the ambulance. Then I crumbled. Nausea and shaking overcame my body. Called my mom. She tried to calm my very anxious heart. She prayed with me. Called Rich. Fever down to 104. O2 down to 2 ltr and 97%. I could breath normally again. My shaking stopped. I wish I had more faith to not be overcome with fear and trembling even when my baby's health is so fragile.

God give me more faith. More trust. Give me the strength when I am crippled with fear. Protect my children.

Thing 1

Thing1 needs a sneak peak picture too, don't you think?

Raise your hands

if you want to see this cute boy? I can't wait to be able to share MORE of this sweet boy. He's adorable.

But for now, this will have to do, I suppose.
.

this and that

I'm hanging out (and quite bored) in room 708 at Children's Hospital of Boston with Mr. I. I am happy because I know he is getting superb care. We are in one of the best children's hospitals in the world and for that, we are very, very blessed. I would love one day to move back to VA (years from now) - but I will hate to ever leave the care of Boston.

I am also feeling a bit sorry for myself being here. Yesterday was gorgeous. Morgann started learning to ride her bike with out training wheels. And I missed it:-( And she read a lot of her bed-time story book herself. Once we get passed all the weird phonics in the English language, she will be a reader. (She thought that "Eigh" saying "ay" was really silly! I must agree with her.) She also prayed last night in sign language. She and Mr. K are working on signing! After one video I am super impressed on the amount of words she can sign already. I'm ready to be back home with my Morgann (and K too.)

Speaking of signing, we've been working with the boys with signing and a nurse yesterday asked if Mr. I signs. She said he was signing "more" and "food" while I was gone. It figures - that boy loves to eat! I am really happy he is starting to communicate. We are seeing slow but steady progress with his development. He also started holding his own bottle about two weeks ago. It is so nice!

K is doing okay. He has the same virus as Mr. I (Parainfluenza Virus Type 3). He is on a little bit of oxygen but doing pretty well none the less. Just a bit cranky. He is starting to sit better and play more. He is rolling a lot more to get toys.

I just realized that Mr. I is asleep and I'm watching Sesame Street. And is it bad, that I've been watching shows like "ICarly" even when I don't have a child around?

Alright, I've blabbered enough. Have a great week.

Five Year Old

Five years went so fast.

It seemed like just yesterday we were leaving Wake Med in our old Jeep Cherokee trying to avoid every pothole so not to bump our little newborn. Now, she thinks that the more bumps while driving, the better.

She is Independent. Smart. Funny. Clever. Helper. Curious. Talkative.

Our five year old.

We love you.

P.S. Stop growing up so fast.

Hospital Mom

So in case you haven't noticed, my blog has become more of a journal of our adventures in health care for two precious boys. Of course I love my sweet FIVE year old and have lots to say about her - but its not like the "Gotta just get my frustrations out on paper, errr, blog" kind of writing that I've felt like doing. (But I do need to post some pics from her birthday!) Just a disclaimer.

Our visit in Virginia ended with a two-day hospital stay for Mr. I. I think we handled it well and now Mr. I is well on his road to recovery. These babies just love hospitals I believe.

I now know that E.R. visits are much better when surrounded by family.

My mom came to the E.R. with us each time. She helped get IV's started and was a pillar of support. She recruited friends to come help with getting I's IV in the last time. He is quite a hard stick.

On the last visit, my cousin, Luke was working. He works in radiology. Every half hour or so, he would stop by our room and check in. He would pat Rich on the back. Give me a hug. Its that kind of support that is priceless in moments of stress. I can't express how thankful I was to have Luke and my mom around. They made a stressful event a bit more bearable.

God is good. All the time. And so good to give us family like mine.

This week has been tough. We are on "vacation." So far, we have had two E.R. visits, three sick kids and 5 prescriptions filled.

My friend Lacey posted this quote on one of her latest blog posts:
"Whenever God inspires, the initiative is a moral one. We must do the thing and not lie like a log. If we will arise and shine, drudgery becomes divinely transfigured.

Drudgery is one of the finest touchstones of character there is. Drudgery is work that is very far removed from anything to do with the ideal – the utterly mean, grubby things; and when we come in contact with them we know instantly whether or not we are spiritually real. Read John 13. We see the Incarnate God doing the most desperate piece of drudgery, washing fishermen’s feet, and he says – “If I then, your Lord and Master, have washed your feet, ye also ought to wash one another’s feet.” It requires the inspiration of God to go through drudgery with the light of God upon it. Some people do a certain thing and the way in which they do it hallows that thing for ever afterwards. It may be the most commonplace thing, but after we have seen them do it, it becomes different. When the Lord does a thing through us, He always transfigures it. Our Lord took on Him human flesh and transfigured it, and it has become for every saint the temple of the Holy Ghost." Oswald Chambers

I opened up a Bible Gateway tab: and clicked on John 14. (Even though Mr. Chambers said John 13...I misread it or forgot, or perhaps God divinely intervened.)

Verse 1: "Do not let your hearts be troubled. Trust in God; trust also in me."

Verse 27: "Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."

Verses 15-23 speak a lot about obeying. "If you love me, you will obey what I command" (15)

So perhaps Mr. Chambers wanted me to read chapter 13. (I should probably go do that too) but God had other plans.

He reminded me through Mr. Chambers that even in the midst of trudgery - everyday nitty gritty hard life - which for our family includes many many hospital stays, ER visits, and prescriptions, breathing treatments, and long sleepless nights - that it is for really, our good. I am not to be troubled or dismayed. God is there beside me. I can press on. And I need to just...well do it. Obey God. In his divine plan he gave us two very special medically needy boys. And someday we will see something awesome come out of it. Though those baby boys' smiles are awesome in themselves.

Another reminder: "I do not give to you as the world gives" verse 27. God has given us two precious gifts. The world may not understand or see it that way. But God, his way is bigger and his gifts are better than any worldly gift.

Honestly, I will be very disappointed if tomorrow (on sweet Morgann's 5th birthday) those boys need another E.R. visit. I will be mad. I will ask God: "WHY??" And if that happens, I pray that God reminds me that this "drudgery" is for his glory, to transform my life, and a blessing to us in disguise. And that I will obey God and give him the glory.

Special

"Special needs" is such a scary term. At least for me. Its a word that is used many time with hushed voices and looks of concern and sorrow.

The other night I spent about an hour try to find clothing for K that works well with his G-J, pulse ox, and oxygen. I specifically like footed pajamas that snap up. They work great. But commonly only come in sizes up to 9 mo. One company makes them up to 18 mo., but at $50 a pair, well that's just not in the budget these days. I googled: "Clothing for G-tubes". Inevitably all the pages were on "Special needs." Do I really have a special needs child (or children)? It made me sad. All my pre-conceived notions about special needs children. The fear. The anxiety I once possessed while pregnant with Morgann that something would be wrong.

The thing is.

All of our kids are special.

They all have some sort of special needs.

And God knows these needs and will give us the strength to face them. Whether its K's interesting choice of accessories or Morgann's need for more discipline and structure.

Not to brag, but I'm constantly being told: "How great a job" we are doing with K and I. How flexible we are..blah blah blah. It is flattering. But honestly, it is not us.

It's God.

And to Him, I need to give more glory. Because sadly, I just usually say "thank you" and don't give the credit to the One who gives us the strength, patience and love for our three very special needs children.