A built-in Toy Option for the low price of an ER visit... updated

I didn't have my camera with me so the best picture I could do was off of my phone, pretty good considering it was dark in there. Kyle loved playing with his IV line and actually only cried for about 15 seconds while it was being put in. He kept trying to hit the nurse with his "club" afterwards though, so I'm pretty sure he harbored some ill-will.

Sunday update: we were told to bring him back in if his symptoms got worse so we ended up back in the ER Saturday night. His rash was worse and he was so incredibly irritable that I had spent the whole day pacing while bouncing him in my arms. He refused to eat any food and wasn't nursing as often as he should. They did another battery of tests and discovered from a chest x-ray that he had fluid on his lungs. It was not severe, there was no other obvious sign, but I am very grateful for his pediatrician, who is a member of our church, who I'm sure listened to inspiration to put him on an antibiotic, even though there was no obvious reason for it. That is what saved him from developing full blown pneumonia. We will be going back in for another checkup tomorrow and hopefully, even though his rash is worse then ever, he will have managed to not lose any weight and we might even see an end in sight .

And just to set the record straight, I really don't have a good attitude about our ER. I hate it actually, but I love my baby so much more then I hate the hospital so in my previous post I was being ruthlessly sarcastic in an attempt to lighten my sour mood over this past month. I am not a saint, this month is driving me nuts and I'm not quite sure how much more I can handle. But I do know the truth in Isaiah 41:10 "Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness." And even more so the Truth in Hymn 85 How Firm a Foundation vs 5 "When through fiery trials thy pathway shall lie, My grace, all sufficient, shall be thy supply. The flame shall not hurt thee; I only design Thy dross to consume and thy gold to refine". Foolish me thought enduring almost a month in the hospital and my baby going through OHS was the climax of my current fiery trial, apparently I have much more dross then I originally thought :).

We just love our ER...

so we have decided to continue to frequent it until everybody knows us by name. As of now we only recognize about a quarter of the ER staff so we have a ways to go. Even while sick Kyle has the best grin ever!

This is what his rash looked like on Thursday afternoon. By Friday morning it looked like this on his belly and extremities and where it originated, his neck, shoulders, and face, are a red, lacy pattern of these little bumps, melded together.

The four large spots you can see here have now multiplied to about 10 and are flat and disc like. When I called his doctor to give a status update, and when the update was "he is doing worse" his doctor advised me to head to the pediatric Emergency Room. There he received IV fluids and they took a blood sample. His white blood count is low, indicating a viral infection, and they sent the rest out for a culture which will take 2-3 days to get results back. In the mean time they sent us home with instructions that we see his pediatrician Monday and if he gets the littlest bit worse to come right back in to the ER.

A gigantic THANK YOU to Mike for watching Sara for us at the last minute so we wouldn't have to drag her with us. We really appreciate you and your family.

Guess Who?

is back on the Down syndrome weight charts!!!!!

Official today at his doctors appointment Kyle is 14 lbs 4 oz... only 2 ounces away from doubling his birth weight!

Unfortunately he is also sick, again. He has a low grade fever and a rash all over his upper body with a few big spots. After consulting with his Medical Assistant Kyle's doctor decided to put him on antibiotics to help him overcome this without any more complications. He also wants me to keep him on Tylenol continually and call him Friday morning with a status update on how he is doing.

Kyle sits!

So proud of his tri-pod sitting!

and even prouder of his actual sitting!

It takes a lot of concentration to stay up.

After months of very little improvements Kyle has suddenly in the last couple of weeks surprised us with his talents. I'm sure a lot of it has to do with the fact that he is finally growing :) so he doesn't have to put so much energy into that. He is up to about 5 seconds of solo sitting! When I showed Kevin the video he said "It looks like Mommy is afraid to let him fall" and I am but I LOVE his hugs and squeals of delight when he does something he knows is awesome and I definately don't want a bad fall to scare him of trying.

What is your opinion...

Look at this painting and of the picture of Kyle... what do you think of the professors claim in the article below?

"In storage at the Museum of Fine Arts in Boston is the secret to what one professor calls “the first Down Syndrome Association in the history of the world.” In 1982, Dr. Brian Stratford, a specialist in developmental disabilities at the University of Nottingham, suggested in the journal Maternal and Child Health that the Italian Renaissance painter Andrea Mantegna used a little boy with Down syndrome as the model for his Christ child. Stratford made a “clear characteristic diagnosis” of the baby based on his distinctive facial features and the shape of his hands and toes. The curator at the MFA dismissed this theory, attributing the work to an unknown, less technically astute follower of Mantegna, and calling the resemblance to a child with Down syndrome accidental. In the meantime, however, Stratford heard from a history professor in Rome. The Gonzaga family of Mantua, Mantegna’s sponsor, had a boy with an unidentified “sickness,” she said, and one of the artist’s own fourteen children shared this condition—a not insignificant factor in Ludovico Gonzaga’s choice of Andrea Mantegna as his court painter. Gonzaga and Mantegna appreciated the humanity of these children whom some might have preferred to hide away or let die, and that shared sensitivity gave them a “sense of purpose” with respect to disability which Stratford regrets has been all but forgotten by our society: “Perhaps Mantegna saw in this child something beyond the deficiencies which now so occupy our attention and perhaps then, the qualities of love, forgiveness, gentleness, and innocence were more readily recognized. Maybe Mantegna saw these qualities as more representative of Christ than others we now regard so highly.”"

I did not know yesterday could've gotten any better...

but it did when I weighed Kyle and realized he had gained an astonishing 11 oz in one week, putting him at 13 lbs 8 oz and back on the very bottom of the Down syndrome weight charts!!! He has been off of the typical charts since he was about 4 months old and has been off the bottom of the Ds charts for the past 2-3 months. I am so proud of him!

I am just so proud!

On Monday during Kyle's Physical Therapy hour he sat in this position for less then 10 seconds, slowly falling down onto his face. He has been determined ever since that sitting is now a possibility and this afternoon he sat in this tri-pod... okay, quadro-pod position for long enough to snap a couple of photos! He managed to stay up on his own for about 45 seconds at one point! I am so proud of him! Another very recent accomplishment of his is self-feeding! We are still working on picking up and letting go but he can easily grab a cracker from your offered hand and bring it to his mouth! It definitely makes getting his dinner ready while he wants to eat NOW easier.

It's Alive!!!