A crazy couple of weeks.

We've had a crazy couple of weeks.  We got a call the day after Memorial Day from Boston Children's GI clinic saying they would like us to come for some GI testing the end of the month.  Matthew's GI doctor had put him on the waiting list to see these GI specialists back in November.  We knew it would be awhile, so when we got the call we scrambled into action.  As I started working on getting everything in place (medical records, out of state medical coverage, plane tickets, lodging, etc) I ran into one obstacle after another.  It was a nightmare.  I could write a whole book about the hours of headache trying to get to Boston was.  Steve and I both prayed that if this wasn't meant to be that God would close the doors.  It sure felt like it wasn't meant to be, but I promised I would be diligent with my endeavors and leave the rest to God.   Steve was sick the whole week of the 6th.  He couldn't shake it.  He was tired; exhausted really.  He had a sore throat, and a scratchy cough.  Finally, the 13th, he called me and told me to make him a Dr. appointment.  He couldn't give any specific symptoms, but just didnt' feel right.  The day after the appointment, he got a call from the office that his la test came back that he was positive for mono. 

Wednesday night I put Matthew to bed early, and he slept all night, all day Thursday, and all night Thursday night.  Matthew was supposed to go play at our friend, Chrissy's house on Friday, so I could take the kids to my work picnic.  Chrissy does respite/ childcare for other kids in her home, most that have special needs like Matthew.  We knew that if Matthew was sick, the last thing he needed was to go to Chrissy's.  We sadly cancelled our trip and made a Dr. appointment instead.  Matthew's mono test came back positive, and I was a bit concerned how Matthew would handle this illness as did his Dr.  He was already on oxygen due to his general weakness.  She drew some blood and sent us on our way with instructions to watch him closely and advised us travel would not be in Matthew's best interest.  The door to Boston had closed.  I knew this was our sign. 

Meanwhile, a friend of mine had agreed to watch my other kiddos at a local indoor play area, so they wouldn't totally feel like we missed out of a fun day.  While there, Micah was jumping in a bouncy house that had a basketball hoop in it.  While dunking a basket ball, his teeth somehow got tangled in the net (I'm envisioning Michael Jordon) and then fell backwards, and completely ripped out his front tooth, root and all (ouch).  Steve to the rescue (I was at the Dr.'s office with Matthew), took Micah immediately to the dentist and he pushed it back in the gum.  He may still need a root canal, but for now he has a sore mouth and a delicate tooth.

My parents came for the weekend, and we had a blast.  We haven't seen my parents since Christmas, so it was wonderful to have my parents here.  After they left, I decided a nice Father's day present would be to clean up our VERY MESSY garage.  I started by picking up all the shovels, rakes and such laying on the ground and then I started sweeping.  In my diligence, I missed a garden hoe that was laying on the ground, and I stepped on the edge of it; and the handle swung up and whopped me HARD in the face.  Immediately I felt blood.  Lots of it.  I thought for sure I'd knocked out all my teeth.  I was sobbing and the kids went running for Steve.  After I collected my self (calling Steve outside was not the right choice; he freaked with all the blood) and finally got up the gumption to look in the mirror, I was missing part of a front tooth and had a pretty cut up, bruised, fat, lip.  I was so sad about my tooth.  We decided it would be best to bubble wrap the rest of the family, since we were dropping like flies :)

 The "toothless"--Mason had just lost a front tooth

 

A close up of my  ouchie...the underside of my lip looked more like hamburger and lots of bruising.

Lucky for me, Micah had a return appointment to see the dentist on Monday, so I called early, and asked if I could come with and let the dentist see what he could do. { I silently wondered what child of his we were going to be putting through college with all of our recent dental visits. :)}  I'm now sporting a temporary crown, and will get my real tooth in a couple of weeks.  My lip still is pretty sore and black and blue, but nothing a little lipstick can't fix.

So that's what's kept us beginning this first month of the summer.  Next month we are planning a vacation, the kids are going to camp, my parents are going take the kids for a week, and Steve and I will be celebrating our 15th wedding anniversary.  We're also going to try to camp a weekend here or there. 

Birthday pics

Matthew's birthday was pretty low key. It was the big kids last day of school; so we picked them up and pretty much just hung out at home all day. It pretty much rained all day; so we stayed inside. For supper we grilled and had my brother and his girlfriend over. It was a quiet evening with lots of "happy birthday's" sung. It's Matthew's favorite song; last year we spent his birthday in the hospital due to the fact he had spinal cord detethering surgery, and we sang that song to him a million times. This year he proved he still loves it!

Singing Happy Birthday to Matthew!

He was all smiles most of the evening

He joined us a the supper table for yummy food!

Because he's our angel; he got an angel food cake for his birthday; topped with whip cream and strawberries. YUMM!!

Happy Birthday, Matthew !!

{More pictures to follow Monday!}

Matthew's new hang out

Matthew has a new place to hang out. Last year for his birthday, we bought Matthew and Ikea Ekorre swing. It's kinda like a hammock, and a swing all in one. Steve finally got around to hanging it in the house this weekend (almost 1 year later) and Matthew LOVES it!

It hangs right in the middle of our living room.

Here's a picture from a distance so you can get an idea of what it looks like. It's held up in two studs with 5" lag screws.

I expect many happy hours spent swinging and hanging out by Matthew!

My teenager!!

Look at this handsome boy! I cannot believe I now am a mother to a teenager!

I get very nostalgic on birthdays. We pull out the photo albums for the bigger kids (and the external hard drive for the younger ones...we don't print off pictures like "the good old days")

I scanned in three of my favorite pictures from the 1st album (birth to about 18 months)

Micah and I- I think he was two days old

Family picture-Micah was about 6 or 7 months old

About 18 months old

I just realized all of these pictures I picked as my favorites were taken in my parents home. How interesting.

Happy, Happy Birthday Micah!!

The first of May

Just a quick update for everyone. Matthew is, well, Matthew. He got a cold 2 1/2 weeks ago; which we managed at home for about a week before he developed pneumonia. He got a trip to the local ER, and ambulance ride to the Children's hospital. The ambulance ride turned out to be a little traumatic for all parties involved when he decided to stop breathing in the ambulance shortly after we pulled out of the hospital. The episode was short lived; but the ambulance driver drove ALOT faster after that. I think Matthew didn't think we were going fast enough :)

He only spent 24 hours in the hospital (thanks to some really great IV antibiotics), and was dismissed to recover at home, since we have oxygen, and IV supplies at home. He was on oxygen about a total of 10 days; and is almost fully recovered now.

We have gotten approved by the state for more nursing hours; and I am now able to sleep ALL night 5 nights a week. TRUE BLISS. I am now a spoiled girl. I LOVE it. Matthew's night nurse is fantastic and takes great care of him. We are getting "day" care 2 times a week too with the same nurse we've had for over a year; so we are truly enjoying the wonderful team we have.

The other kids are counting the days till summer break (3 weeks) and I am looking forward to it too!

In 5 days I will have a teenager. Oh MY. I am not ready for that.

Hopefully the next post will contain pictures of my growing chubby boy and his adorable siblings. Happy May day!

Still here

Just wanted everyone to know we are still here. Matthew has good days and not so good days. He received his first botox injections today. The procedure was quick. The ENT said that it would start kicking in in the next few days. Hopefully we will see this help him. We will hopefully be able to decrease or even eliminate the Robinol medication. We will restart feedings in the next week to see if he will tolerate some feedings in his gut. If he does, we will start weaning him off TPN. I think this will be a slow steady process.

Sorry I haven't had any updates. But there isn't anything to update about. Just normal day in, day out stuff. Rinse, wipe, repeat.