Friday, December 31, 2010
11 trips to the ER
4 ambulance rides, I,K,K
9 admissions: I,I,K,I,K,K,I,K, I
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
Tuesday, December 21, 2010
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.
Tuesday, December 14, 2010
Friday, October 29, 2010
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.
Thursday, October 28, 2010
Tuesday, October 5, 2010
Sunday, September 12, 2010
Tuesday, August 24, 2010
Thursday, August 5, 2010
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)
Wednesday, July 21, 2010
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.
Monday, June 7, 2010
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:)
Wednesday, June 2, 2010
Monday, May 10, 2010
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.
Sunday, May 9, 2010
Saturday, May 8, 2010
God give me more faith. More trust. Give me the strength when I am crippled with fear. Protect my children.
Thursday, April 29, 2010
Monday, April 12, 2010
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.
Sunday, March 7, 2010
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.
Thursday, March 4, 2010
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.
Thursday, February 25, 2010
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.
Monday, January 11, 2010
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.
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.