MRI For Luke

We have been busy on vacation seeing Ken's family in South Carolina and a quick trip to the beach! Luke is having a MRI tomorrow (Tuesday 6/05) to check for a brain malformation. We have to be there at 9:30 and the procedure should start around 11:30. He will put to sleep and intubated by anesthesia so please pray that all goes well. He has always done great being sedated (knock on wood!) but every time he goes under it is a risk. The MRI should last around an hour and then we will go to recovery. We will hang out there for just a little bit and should head home late afternoon. Please pray that he does well and whatever God's answers are will be revealed. I don't know if I want him to have the chiari malformation or not. I will be honest.. I am a little pessimistic about Luke and his tests. I get frustrated about not being able to have answers and whenever I get a little hope that something may be found, it turns out to be nothing. I am going into this test just asking that God will give us answers--even if it is that nothing is found. There are different roads to go down with each result--some harder than others but all with the same result of trying to get Luke to eat and drink and get rid of his feeding tube. Please pray for Luke that all goes well, for this tired and frustrated mom, and for his daddy too! Thanks!!

Here are a couple pictures from our trip (more to come/ click to make bigger!):

Playing with cousins

Silly Faces!

Luke with Mommy

Jack with Daddy

Cool Boys!

 

 

Wagon rides with Grandma

Luke playing guitar with 2-Daddy (great grandfather)

Jack with GiGi (great grandmother)

4 Generations!

Telling Uncle Sean a story

Watching TV with Aunt Laura

Some new pictures

We have had a great spring.  The boys are loving school and doing well.  Their immune systems are still trying to adjust and they've been sick a few times, but it's nice not having to watch and entertain them all day every day.  Here are a few recent pictures:

Swinging in the back yard

Always wanting to swing higher and higher

While the boys had strep, Jack woke up from a nap and couldn't find the sticker on his shirt...

We visited Toad Suck Daze in Conway and Jack loved sitting in a fire truck

Luke didn't really want the hat - he just wanted to ring the bell on the fire truck again

Luke continues to try new foods.  He is still not eating much, but will smell and lick most things, sometimes putting them in his mouth and sucking on them a little.  He usually has some ketchup or applesauce at meal times.  He is drinking much better - loves water from a sippy cup and did well with a juice box!

Some days.....

Some days the boys love each other but some days they fight all day long!

Luke's new song

In 2009, around the time the boys were born, Kutless released their album It Is Well. The first single was the song "What Faith Can Do" and that became our song for Luke.  Here is a video for the song:




Luke has come through so much and although he is doing pretty good in general, there are still many unanswered questions and a number of issues still to overcome.  Just a few weeks ago, Kutless released a new album Believer and once again they have a song that fits Luke perfectly.  It is called "Even If" and does not have an official video yet, but here is the song along with its lyrics:

Another set of tubes

Luke is doing a lot better since getting tubes in his ears. He is talking more, repeating more things, and is just louder overall. He's now starting to sing the ABCs and parts of other songs. Yesterday was Jack's turn to get tubes. We've been so wrapped up with Luke that we didn't realize how many ear infections Jack has had. It seems that at least every other week, one of the boys is not feeling well and the normal routine slows or gets put on hold for a few days.

Last month when Jack had an ear infection I asked for a referral to the ENT clinic at Children's since we love Luke's ENT doctor there. Before the appointment, we looked back through prescription records to see how often he's been on antibiotics - since last October (2011) Jack has had seven ear infections. Last week was the ENT appointment and there was an opening in his schedule, so I jumped at the chance to get it done this soon. Since Luke did so well with his tubes, it was nice to know how quick and easy it would be.

Jack was very hungry (procedure didn't start until 11am), but did great. Woke up happy, drank a lot right away, and he was home and napping before 1pm. He was back to his normal self last night and back to school today.

I say....

Jack hasn't been feeling well and I am pretty sure he has another ear infection. We see ENT on Thursday and will be scheduling him to get tubes as soon as possible. Today his stomach is upset and didn't keep his lunch down. A couple hours later he had kept down some pedialyte and saltines. I was eating my snack and Jack kept asking for a bite. I didn't want to give him any because it was seasoned and cheesy so I didn't want it to upset his stomach. He kept begging and being pitiful so I gave him "one bite" which was really 3. I then told him no more and this is our conversation:
R: no more JJ (several times)
JJ: please. More. Please. Bite. (As he is furiously sighing please)
R: no JJ. Mommy said no. I don't want your tummy to get upset.
JJ: please.  More. Please. Bite.
R: What did mommy say? Mommy said no.
JJ: (real quite) mommy say no. I say more.....

Jack is getting sassy and too smart!
Love my 2 year olds more every day!

Easy....

But not necessarily quick. Dr. F (GI DR) called us a couple days ago and the results are in. Luke has unspecified hepatitis which means there is no known reason for his elevated liver labs. The good thing is the biopsy showed no inflammation, scarring, or disease! In most kids with unspecified hepatitis, the liver fixes itself but it can take a long time. Dr. F was happy with the results and said all we will have to do is follow Luke's labs every couple months. This result is such a Luke diagnosis! Something is off and we run all kind of tests just to tell us there isn't anything wrong or it is something that will resolve over time. Patience is not my strong suit but Luke has truly taught me many lessons...all the way back to waiting just to get pregnant. Happy with diagnosis and happy to wait for resolution since there isn't any damage.

Thanks for the prayers. Hopefully this is the last major test Luke will have for many years.

Jack really needs tubes in his ears and we are hoping to get him schedule for surgery as soon as possible after his ENT appointment in April. Jack has his 7th ear infection in 7 months and this one was pretty bad per the doctor. He is finally feeling better and back to his sweet-ish (as sweet as a 2yr old pushing limits can be) self.

School pictures were today and I am hoping they were still enough to get a good shot. Will post pictures soon.

--R