The Best Day in a Long Time...

Yesterday (Saturday) was the best day we've had in a long time. I can actually say that it was the first day I haven't cried hot tears of frustration and sadness in weeks. WEEKS.

This has been the most prolonged stressful thing I have ever dealt with, by far. My pregnancy with Julianne was touch and go and we dealt with my miscarriages, but this has been prolonged stress, with zero answers. I don't like to live my life that way. Even walking the infertility road, we knew what the problem was.

I completely relate to Lainey and Julianne when they ask me questions about expectations. Both girls like to know what is going on, what is going to happen next, etc. I'm not sure if they are wired like that, or if me explaining to them (because that is how I'd want to be treated) has taught them to ask those things. But either way, I have no issues explaining to our children what to expect.

No one, no one, has been able to tell us what to expect with Xander. We get a lot of maybe, hopefully, and theoretically. And then he does something unexpected and it all starts again. This whole parenting gig has been an interesting lesson to me. Can anyone predict with certainty what they can expect out of childhood? Yeah, me either. Parenting is humbling that way.

But this whole health issue thing has taken that to another level.

Xander once again lost his speech. I fully believe that he COULD talk and was in such excruciating pain again, that he simply couldn't tolerate it. I asked him to use his words, just tell Mommy, and all I got in return was screeching and screaming and flailing about. So we lost speech and I felt that panicky feeling all over again. I think my deepest fear is that he was going to lose speech and we weren't going to get it back. Sure, he hopefully would. He theoretically should. But I've learned that there are no guarantees.

In a bout of frustration, and searching for something, anything to help him, I discovered that Prevacid contains lactose. We know he has issues with milk, soy and egg, but we aren't sure what part of the milk he has an issue with. Some people have issues with casein. Some have issues with lactose. Some have issues with milk, period. Personally I think that we fall in the milk group and so when I discussed it with Brandon we decided to discontinue the Prevacid. His last dose was Thursday. Friday, the screaming and screeching was still terrible. But Friday night things seemed to even out a bit. Xander was engaged and playful with me for about 20 minutes before supper. He sat in my lap. I tickled him and was even allowed to tickle him on his tummy. Pretty soon, he was going to play with toys and off he went. It was pure bliss. At dinner, he ate the best he's eaten in weeks. He ate REAL vegetables, not babyfood puree. And I started to feel hope rise up within me.

I prayed desperately that night, to please, please let my Xander be the same or better the next day. I tossed and turned, and read his records over and over. I begged God to just please let him be "with us" the next day. Not in a physical sense, but engaged fully. Please God, just let him be WITH me tomorrow. I fell asleep around 3 am.

Saturday, I had a whole new kiddo. Sure, we still had typical two year old meltdowns. For example, I allowed the unthinkable to happen. We ran out of bananas. So breakfast caused a disagreement because Xander was insistent he was going to have a banana that I couldn't produce out of thin air. And I've never been happier to see a typical two year old tantrum in my life!

I watched him as he played with his toys. He sat for probably about 15-20 minutes playing with various vehicles at the dining room table. I sat still, just watching our boy do what 2 year old boys do!

He ate his lunch and was a happy boy. I think I saw more smiles yesterday than what I saw for weeks previously.

Naptime brought typical tears. No two year old wants to go to sleep! "Mo-om-ma" he shouted from his bedroom. But then... he went to sleep! Imagine that!

He woke from his nap and was happy as a clam. Daddy came home shortly after and I was frantically trying to get us all ready to go out. When Brandon asked where I wanted to go, I said "ANYWHERE! I just want to go!!"

Xander heard that we were going bye, bye and his speech picked up. "Go bye bye?" he asked. Yes, Xander. "Go bye, bye with Goggy (Daddy?)" Yes, Xander. "And Mommy?" Yes sir! And Nene? (Lainey) Yes. "Ann?" Yes. "Sowee?" (Soli?) Yes. He ran to get his shoes. I looked at Brandon in disbelief. He hadn't said their names in quite some time. Brandon became energized and suddenly we were ready to go.

Again, in the van, Xander was engaged and alert. He didn't even care that his favorite CD wasn't playing. We were living dangerously, listening to the radio. Usually that is met with sharp disapproval from a certain 2 year old.

He pointed out every truck as we went across town. He was happy in his stroller as we window shopped at an outdoor mall.

He asked for dinner. This is something that has been very spotty in the past few weeks. He has rarely asked to actually eat. Usually, we just tell him it is time. In fact, he asked specifically for french fries. He hasn't had those since December! I've never been so happy to buy him a kid's meal!

On the way home, it was quiet and dark and I started realizing just how much we had lost in just a sense of normalcy. Brandon and I have been known as very spontaneous people. It made us laugh each time we added a child and someone said "Oh that will slow you down!" It wasn't a newborn that had slowed us down. It was a very ill boy. A boy that we are still desperately seeking answers for.

But yesterday showed me just how good, good can be. It has renewed my resolve to continue to not accept this lack of answers for my precious child. I will not accept a poor quality of life for Xander and it has encouraged me to continue to demand answers on his behalf. He can't tell me exactly what hurts, or what is wrong, but he has told me plenty. And I have a big enough mouth to tell the rest of the world for him.

~Stephanie

PS: We were thrilled to find out on Friday that Xander's strep test was negative. This is great news because it means he doesn't need antibiotics that could cause another cdiff flare. I also spoke with the nutritionist at length, and I think through the sobbing on my part and an clear expression of my frustration without backing down even an inch, she finally understands what we are dealing with. Perhaps I had been too polite and accomodating before in an attempt to play by their rules and play nice. Gloves off, folks, I'm fighting for my son!

My Eyes are Crossed, but I Found a Nugget of HOPE!

I've been reading and reading and reading. Today was a veg out day, we stayed in pajamas all day! Have no fear, I'll shower and change into fresh pajamas before I go to bed. :)

However, I've been searching the internet and reading until my eyes are nearly crossed!

Imagine my relief (delight? deliriousness?), when I ran across this:

Legius Syndrome Often Mistaken for Neurofibromatosis Type 1

Did you read it? Did you see this part?

"Legius syndrome typically follows a more benign course and clinical management should primarily focus on developmental and speech delays, learning disabilities, and attention deficit and hyperactivity disorder," Dr. Messiaen said.

I'm printing this article to add to the notebook we take to our appointments.

Legius Syndrome and Neurofibromatosis are two different gene mutations. It is common to have cafe au lait spots as your only physical sign of Legius Syndrome.

Oh please, Lord, let this be!!!!

~Stephanie

Doing the next thing...

Today we got a call from an agency we've been in contact with. The call came in a little after 8pm, which is well after I gave up hope of getting a phone call today. My hopes seem to rise and fall with each 8am and 5pm cycle. LOL

Anyway, we were told that we are one of three adoptive couples that are being presented for this adoption situation. That presentation will take place this week. I've seen pictures of this baby and he is adorable. (Aren't all babies?)

Meanwhile, another adoption agency has us in a pile to possibly be presented to another potential birthmother this week as well. I've not seen pictures of this baby but he is already born. I bet he is adorable too.

So, what's a girl to do?

N-E-S-T!

The fridge is cleaned out and the pantry is straightened. I purged some paperwork. Our laundry was complete until we put on pajamas tonight. I sorted through baby boy clothing. I played around with some travel arrangements. I started to think about what to pack. I made a grocery shopping list and a "To Finish" list.

Tomorrow we will go and get refills for prescriptions (they just happen to coincide with this), fill out paperwork for some reimbursements, and do a grocery shopping run. Then we will head to the pool to live life as a family of six. I'm not sure we are brave enough to take 5 children to the pool without any help.

We temper every hope with the fact that there is a chance we don't be picked. And this is why adoption nesting is different than pregnancy nesting. When you are pregnant you have a date to count down to-- a general idea of when baby will arrive. We don't have that.

But I ate a philly cheesesteak tonight.. just in case. You know... cravings. ;)

Would you pray for the birthparents as they make these life changing decisions? Pray that they are being supported by caring professionals and that they have peace with their decisions. Pray for the children as they are awaiting their placements. And pray for the adoptive families that are going to bed tonight, hoping.

~Steph