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Monday, May 17, 2010

An Update

So I sadly crossed my own blogs path several days ago and realized, for how much I love reading others blogs I can't seem to find the "time" to update mine. I have so much to update others on regarding the kids and our family I don't quite know where to begin. I will start with the good. Hannah and Ethan are growing up so fast before my eyes. I am happy to say that they get along great and often I find them playing together in the little playroom kitchen and sharing books. They both love books. Hannah is so smart for her age and she surprises me daily with the new things she is saying and doing. I told her the other day "I am the boss" and she said back to me "Mommy, why don't we both be bosses"? She knows the Lords Prayer and she says it to me every night before bed. She also has memorized the words to almost all of the stories we read to her. Ethan is also growing in leaps and bounds. For a child that we were told "may never walk", he is running!!!! We feel so blessed everyday for his progress with his motor development. He loves to build and to organize things and he likes to learn how things "work". He does many little fine motor skills that Hannah could not do at his age. He is almost always good tempered and mild mannered - except when he doesn't get his way or you want to change his diaper!
We have had several issues with his health in the past few months. We have noticed that he always seems a bit sick with a small cold that he never seems to get rid of and that usually turns into an upper respiratory infection sometimes resulting in a visit to the emergency room. They have given us a daily inhaler and a nebulizer for at home treatments, thank goodness!! This helps with the asthma and junk in his throat. He had gotten a chicken pox vaccine in January of this year and following that had six weeks of diarrhea!! It literally would not stop. They did food allergy testing, stool samples, and a blood test. Everything came out inconclusive except for the blood test. He had two types of antibodies that showed up low. What this definitely means is that he will get sick more easily than others and be sick for longer when he does get sick and that it will most likely always end up in his lungs. I was sad about this, but hopeful that it wasn't something worse. In the meantime I have had him on several different diets to stop the diarrhea: lactose free - for 6 weeks, then wheat free. It wasn't until I tried the wheat-free that I noticed a big change in Ethan. Whereas he only slept for 2 hours at a time before, he started sleeping 6 hours straight!!! Also he was less irritable and rubbed his eyes a lot less. I had the doctor try and test him for celiac disease but since his antibodies came out low they were unable to get an accurate result. We have went to a GI Peds specialist and they feel that he probably has a Gluten Intolerance instead of Celiac disease based on the fact that his reaction to eating gluten foods is within an hour. For people with Celiac it is usually within several days for a reaction. The next step is to get a genetic test done to see if he has the gene for Celiac disease. The only problem with this is that 25% of the population that has this gene does not have Celiac disease. So if the test comes back positive then we would have to put him back on a gluten diet for several weeks to get a stomach biopsy. I WILL NOT do this to him!! So my hope is that the Celiac gene test comes out negative and I can stop there. Knowing he is only Gluten Intolerant means that at a certain age he can gauge how much he can eat without feeling sick. Kind of like me - I can eat cheese but not milk or ice cream. We are still waiting to be referred back to GI and to an Immunologist regarding the low antibody blood test. Our insurance changed and now we will be going to Rady's Childrens Hosp in SD instead of Loma Linda. I am sad but it is sort of bittersweet for me. It was very hard to drive near that hospital because of the memories of when Ethan was small and could not be brought home. I stayed there because I loved the care and I hope I can say the same for Rady's.
This is just a bit of where we are right now. I can honestly say I LOVE staying home with the kids. Everyday they do something new to surprise me and I get sad when I think of Hannah going off to school and it just being me and Ethan. She is such a good girl and she's my little helper! They grow up way to fast although I do look forward to Ethan sleeping through the night! But - Hannah didn't do it until 2 years old and since he's a preemie I am gonna not expect anything until he is at least 2 1/2. Other than that we are all doing fine and looking forward to our first real "family" trip this summer. We are renting an RV!!! Should be crazy, I know but I love building these memories with my kids and I feel fortunate we can do so.


Spence Ohana said...

What!? A blog update!? :)

Great to hear updates on the kiddos. Can't wait to see them again in a few weeks.

Well at least it's much easier now to find glueten free foods. Our grocer has 2 aisles of them now. David and Armilyn keep Alex on a glueten free diet and from it they see much improvements.

Look forward to seeing more blog posts in the future!

P.S. An fun!

Stitcher S said...

Good to read an update here!

Now it's time for another one.

Sue said...

Waiting for another update! :)

Fisher of men said...

What a beautiful little girl you have. And I nice web site I might add.


melody said...

She's beautiful :)

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