Endoscope Tomorrow

Well, tomorrow is the endoscope.  The cold is just about over, the congestion much improved, so I don't think it will pose a problem.  The GI doctor will be putting a camera down Levi's throat to check his esophagus, stomach, and intestines.  His vocal cords were red and swollen last month at the ENT appointment, so I'm curious to see if there's been any difference.  We've been giving Levi Nexium an hour before meals instead of with a meal in the hopes that this is what was causing the return of acid reflux, but it doesn't seem to have made a difference.  He still swallows and spits up if he lays flat on his back.  We would just really like some answers.  His poor little nose is red from the suctioning we have to do several times a day.  Please pray that this gives us some answers, and that the problem is simple to fix.  Levi has already been through so much!  I'm hoping we can wrap up the remaining issues (seizures, congestion, acid reflux) soon, so we can enjoy a year without so much struggle.

After church today we went out to lunch and put Levi in a regular high chair with our jackets around him to give him some stability.  He sat in it through the majority of the meal, holding his head up and being a big boy! Of course we had to take a pic to commemorate the occasion!  Way to go, Levi!!

More Rolling Over

Levi is learning, learning, learning!  The other day he was laying on the floor looking at his light box (for vision therapy) and he rolled from his back to his side, and continued onto his stomach!  This is the first time he's rolled completely from one side to the other. Previously he has been able to roll from side to back or stomach, but this time he completed the entire roll!  We are so proud of him!  Yesterday he rolled from his back to his side while he was sleeping!  It was so adorable, he was all curled up around his blankie.  It's so encouraging to see him doing so many new things even though he is still on so many medications.  I can't wait to start Clobezam!  We will be at Cardinal Glennon on Monday for the endoscope, and hopefully I'll be able to speak with the neurology department and see when we can expect to begin it.  Levi is getting over his cold, thank the Lord, but still has a runny nose.  At least it's better than a stuffy one!  Please pray that the cold is over by Monday.  If he has a lot of extra congestion we will have to reschedule the surgery.  Also please pray for his safety during and after the procedure, and some answers!  Thank you!

I laid Levi on the bed next to Snickers.  Too cute!

Screaming Fit

Levi continues to feel kind of crummy.  He's been congested and sneezing all day long, not real hungry.  He's taken his meds well, and is drinking well, so I'm glad about that.  At suppertime tonight he was super cranky.  Usually when he cries like that it means his teeth are hurting, so I gave him Baby Orajel, and  he chewed on my finger, which typically calms him right down, but not tonight.  Nothing I did made any difference to the poor little guy.  It scared me a little bit, because it's been a long time since he's had screaming fits, which of course was due to acid reflux.  I wonder if his arms are hurting.  He won't let us do anything with them.  We had a Jacuzzi bath and I just let him soak in the warm water and bubbles.  He did calm down and enjoy the bath.  Now he's cuddled in Daddy's lap and content, thank goodness!  We have the endoscopy on Monday.  He definitely needs to get over this cold before then.  We would certainly appreciate prayers sent his way!

Another Cold??

Well, Levi has been more congested again, sneezing, and let's just throw a little teething in the mix.  I really hope he's not getting another cold! He certainly needs to be healthy this week. He goes in this coming Monday for the endoscope to check his esophagus, stomach lining, and intestines. We know that he is still having issues with reflux.  Seems like anytime we lay him down flat he starts swallowing, getting fussy, and spitting up.  He spit up quite a bit of phlegm three times today.  Hopefully he will stay healthy, and this procedure will show us what's going on with his acid reflux and constant congestion.

We've not started Clobezam yet, I'm not sure exactly what the process is since it's just been approved in the US.  Hope to have it soon.  Please keep Levi in your prayers.  We are praying for you, too!

Reflections...

The following is an excerpt from my journal last New Year's Eve: "Strange, it doesn't feel like New Year's Eve.  All I can say is I'm looking very forward to a new year.  Today is Day 5.  Levi continued to seize so the doctors decided to put him on Pentabarbitol in a drug induced coma for 10 days or thereabouts.  They are working right now on placing an arterial line so they don't have to stick him for blood and meds.  The Pentabarbitol will allow his brain and body to rest and heal while the antibiotics are working to fight the infection."

Wow, it's been quite a year.  We endured a month in the hospital, dealing with the dreaded PICC line and IV antibiotics that we had to give at home, brain surgery, endless hours of daily screaming that went on for a couple of months, new seizures, 2 hip surgeries, a body cast, hip brace, several new medications that we hoped would end the seizures but only ended in disappointment and sometimes in worsening seizures, and countless trips to Cardinal Glennon to visit countless specialists.

We have been blessed by our family, church family, and friends who gathered around us from that very first day in the hospital and have always been there to love us and support us.  Tommy, who had to do without his parents and stay with Aunt Misty every night.  Mom, Misty, Shelly, Brian and Dale, who spent so many hours at Cardinal Glennon with us.  They brought us puppy chow, made homemade soup, and paid for our meals.  They spent time with us when we couldn't even walk into Levi's room, because even that small amount of stimulation was just too much for him.  We all hung out in the McDonald room, a lovely oasis where we could shower, have coffee and snacks, and just look at walls that did not resemble a hospital.  I'll never forget my favorite volunteer, Gary.  He always baked delightful snacks and cheered us with  his sweet personality.  We had many interesting discussions. (Gary, if you read this, please let me know.)  We met the most amazing nurses: Elizabeth, 3 Sarahs, Tiffany, Darby (who let me hold Levi for the first time after he came out of the coma), Marie (who saved Levi's life when he was choking on the breathing tube), and many others.  We've met other families who understand just how we feel: Jessica, Erin, Shannon, Amy.  We've been blessed with therapists who come into our home and not only teach Levi, but love him: Shawnery, Becky, Diane, Mary, and Jenny.  All his doctors are wonderful, but we feel a special bond with his neurologist, Dr. Chrusciel.  We've been in such close contact with her for so long, she's more like a member of our family.  There are really no words for the high quality of care she gives Levi!

So as I reflect on a year full of both trials and blessings, I am again ready for a new year.  I'm ready for seizure freedom, ready to watch Levi learn to crawl, and walk, and run.  It's going to be a great year!  Happy New Year to all of you!  Thank you for your continued prayer for Levi!

Shout it from the Rooftops!!

As I mentioned, Levi did roll to his tummy the other day, but it was definitely a struggle for him.  It probably took him an hour to figure out how to get his arm out from under him.  This morning I laid him in his bed on his side, and when I went in to check on him about 10 minutes later, he was completely on his tummy, arms at his sides, almost asleep!  I just want to shout it from the rooftops!  This baby is LEARNING!! He figured it out and now he knows!  I could not be more excited right now!  Thank GOD for these blessings!  

A Little Bad, A Lot of Good!

Levi's been doing so well lately!  We have come all the way down from 6 pills of Topamax twice a day to 3 in the morning and 4 at night.  Unfortunately, the last few days his seizures have doubled, so this morning I increased back to 4 pills.  I will talk to his neurologist in a couple days to see what she thinks, but I just couldn't watch him having seizure after seizure like that again.  And to think he used to have many, many more than that every day!

We took the week off therapy appointments, but Levi and I have been working together and he's doing great!  I laid him on the floor on his side with some toys and, as usual, he was able to roll almost to his tummy, but he's never been able to get his arm out from under him.  It makes him mad and he fusses, so I tend to help him out.  Well, I realized this is not really helping him, so I let him figure it out on his own.  He fussed lightly, but after a while he did get him arm out!  I was amazed and thrilled to see that!  I've also realized that I hold him like a newborn way too much, so I've been sitting him on my lap and putting him in positions to encourage him to hold his own head, and he has definitely risen to the challenge! When I carry him up on my shoulder now he holds his head up and looks around.  It's too cute.  While I walk his little head bobs a bit, but he can keep it up when he wants to.  I'm seeing so many differences in him now, it's so exciting!  I think we're finally to the point where he is learning and becoming interested in what's going on around him.  He's been putting his hand in his mouth!  I can't wait until he starts reaching for things!  What a blessing this little guy is for us!

Prayers for Baby Caitlyn

I'm sure many of you remember the sweet little miracle baby, Caitlyn, who surprised everyone with her recovery, against all odds.  She has been home for quite a while now, but is heading in for surgery today.  Please keep Caitlyn and her family in your prayers.

Father God, please hold Caitlyn and her family in your arms today as they go through this scary experience.  Guide the hands and minds of all the medical staff who work on Caitlyn. Show them the true problem and how to fix it.  Give Caitlyn strength and bring her through the procedure in good health.  Give her family your peace, that surpasses all understanding.  All this we ask in Jesus' precious name.  Amen!

December 27, 2010

December 27, 2010.  This day will forever be etched in my memory.  This is the day our whole world changed.  As we mark the one year point since Levi was rushed to Cardinal Glennon for the first time, I find myself reflecting on everything that's happened since then.  I expected to feel sadness today, to relive that day, and all the pain and sorrow it brought.  I had planned an eloquent retelling of events.  But instead, all I feel is joy.  We came very close to losing our precious little boy, but by the grace of God, we did not.  Levi is here with us!  All things considered, he is healthy, happy, and full of potential.  He has come so very far since this time last year!  He is our joy, our precious gift from God, and we are so thankful to have him in our lives!

Pictures with Santa!

Levi had a much better day today. He ate and drank well, and didn't gag on his bottle this evening.  Praise God! His normal congestion is enough to deal with, we don't need all this extra phlegm!  He had both physical and developmental therapies today, and did very well for both.  He held his head better, tolerated weight bearing on his arms, and sat up.  He used the light box for the very first time with Mary, and he loved it!  He was immediately looking at the dots on the screen.  It's a really neat thing, I'm excited to try it out and watch his reactions.

We received our pics with Santa from the Delta Gamma Center for Children with Visual Impairments today.  Our little Levi is so cute :)  Merry Christmas!