Friday, June 27, 2014

update on Brielle: a crazy week with a hope-filled ending

Well, what a week this has turned out to be!

What's even more amazing is that God already knew what this week would look like for us, what the outcome would be, and He paved the way ahead...

Last Tuesday, I (Charisma) had my wisdom teeth removed as scheduled (fun times, yay). Jonathan was off for the week as planned to help with the kids and give me time to recover. So thankful for his care over our family!

Saturday (June 21st) was the first day I started to feel normal enough to venture out, so we ran some errands, took the kids to the library, and had a late lunch at CiCis pizza.

At 2pm, we were waiting in line to pay for our pizza, when Brielle had her first "event". I call it that because I had witnessed similar episodes so it didn't immediately alarm me.
This past Spring, she has had a handful of what I call, "absence seizures", or "spacing out episodes", where she would kind of tense up, get a little jittery and look really focused, as if she is trying to pass gas or something. But her arms and legs would still move as normal, and she would still make eye contact. After doing some research and discussing it with her doctor, none of us were concerned about them immediately.

However, the episode last Saturday was different. She completely stiffened, including extremities. Her eyes were glossy and unable to make eye contact, her breathing slowed or stopped for about a minute, and afterwards she was so lethargic, she fell asleep. I tried to feed her because food has always been a major motivator for her (ha!), but she wanted nothing but sleep. I woke her up 15 minutes later and she ate normally and seemed herself again. I assumed because it was past nap time that maybe she was just extra tired. I'm not sure if at that point I realized that it was a more serious seizure, or if I chalked it up to just another spacing out episode.

Once we got home, the kids went down for naps, and Brielle slept for about 2.5 hours, which is normal. A little bit after I got her up, at 6pm, she had another seizure. Then at 7:45, 8:45, 10:00, and the last one sometime around midnight (after we got to the ER).

Once we realized there was a pattern and they were happening frequently, we called a local friend (who was a nurse) for advice, and while we were on the phone, she had her most severe seizure. Even though she never had convulsions, she seized long enough (maybe 1.5 minutes) that her lips starting turning purple, eyes started rolling back in her head, and for a moment got floppy and almost lost consciousness. That was a terrifying moment as I considered doing CPR and calling 911. However, she came back to us and we realized this was very serious, and if the trend continues, we may only have about 45 minutes to get to the hospital, so we immediately drove to the ER.

Now, I need to pause the story here to thank God for our church family, Sovereign Grace. Not only did we have tons of people praying for our daughter, but we had Mike & Alan show up at the ER right along with us, and people calling the ER to inform them that we were coming.
Pastor Billy not only called and checked in on us several times, but spent the majority of the night awake because of his concern for Brielle, praying for her, and at 4am SHOWED UP at the hospital to be with us and pray with us. I have never met such a compassionate and spiritually-sensitive pastor who is that in-tune to people's needs. He blessed us so much by caring so deeply during a difficult moment, and ACTING selflessly in response. Thank you Billy!

It was providential that we were in the ER on Saturday night, because by Sunday morning we probably had a dozen churches across the US praying for her during their morning services, not to mention hundreds of individuals all across the states and even internationally! We had messages coming in all weekend long offering help, including quite a few who offered to take care of our son while we were with Brielle.

Brielle was a champ, enduring the countless nurses and doctors poking and prodding her all weekend. While at the ER, she had a CT Scan and blood tests. Exhausting their resources, they felt she should get transferred to a children's hospital in Lubbock, that also had a neurologist.

I (Charisma) rode with Brielle in the Ambulance transferring service while Jonathan went back home to be with Judah and give him some stability and normalcy for a while. We figured there wasn't much use in both of us sitting in a hospital for possibly days, unless an emergency arose and then of course he would come up. And we didn't want our son bouncing from house to house not knowing where his parents were.

Side Note:
Now both my son and daughter have exciting stories to tell about their hospital stays! I was life flighted by helicopter just hours before Judah was born, now Brielle has her own story about riding in an ambulance! (We had the option of taking a jet, but didn't feel the urgency to go that route.)

At the hospital, Brielle had another round of bloodwork, an EEG (both 1 hour and overnight), and EKG. Every single test came back negative... she is the healthiest 'sick' little girl I know, apparently ;)

No more seizures to speak of (almost a week later), and she has been her normal sweet self, which we are so grateful for. We don't have the answers yet, but we are thankful to God for...

- the caring and thoroughness of the staff at both hospitals, and the ambulance team
- the timing of Jonathan already being off work for the week, and his boss who did his best to try and get him an extra day off
- that I was mostly recovered from my wisdom teeth surgery, and able to be with Brielle and take care of her
- everyone's prayers, and those that went out of their way to help us in practical ways, like watching Judah, money, food, encouragement, visiting at the hospital, etc.

So remember how I told you that God was paving the way? Aside from things already mentioned about the timing... would you believe that He also orchestrated the financial side of it? And His care for Brielle's other developmental needs?

When Jonathan checked the mail on Monday (Brielle and I were still in Lubbock), there was a completely unexpected check for a significant amount in there from a family member. It was sent "just because", before Brielle's first seizure had even occurred! THAT, my friends, is how God cares for His children (and possibly shows off a little ;)

Also, another providential blessing... had Brielle not had those seizures, it may have been months (if ever) before we would see a neurologist or any specialized doctors for her developmental delays. Dare I say, I am thankful she had the seizures (though I certainly wouldn't want her to have another!), if that means we now may find out the cause of her other problems! Whether or not the seizures are related, we don't know... but we are now connected to doctors that might be able to find the answers, or at least a hopeful direction.

What's to come is still unclear. She has been given a clean bill of health, though there's always a chance she could have another seizure because we just don't know. Praise God, though, that she is considered low risk for repeat seizures and does NOT need to be on any medication!

Right now, we are pursuing genetic testing. We also will be making appointments with a developmental pediatrician here in town, as well as a follow up with the neurologist in Lubbock.

Keep praying! This sweet girl has stolen our hearts (and the hearts of all her doctors and nurses I might add)! She is a precious gift from God that we do not take for granted. It certainly isn't fun to be venturing down this unknown road with her, trying to find ways to help her thrive and grow and develop the way she should, but we are thankful for health, life, and a sweet spirit in her. I know she's in good hands... because they are HIS hands.

Saturday, June 14, 2014

He is faithful: an update on Brielle's developmental journey

It's been several weeks now since Brielle has started therapy, and she seems to be responding well to everything. She sees three, soon to be four, different therapists (thankfully in-home and state-sponsored so practically free!) twice a month for different parts of her development. It's a bit daunting to think about all these appointments and to go through this process for an unknown length of time (yet again), but we've gotten positive feedback already and her therapists are optimistic.
Mostly we've been focusing on gross motor / physical therapy, but she also has fine motor / occupational therapy, skills / general overall therapy with her case manager, and will eventually include speech therapy as well. We are focusing on everything from core and muscle strengthening exercises, to hands-and-knees time, spoon self-feeding, more interactive play, as well as sitting more stably and transitioning into a sitting position.
This is bringing back a lot of memories from Judah's growth, and if you've had a normal-developing baby, most of those things just "happen", or transition so quickly you don't even notice them. With both our kids, even the littlest achievement is something to celebrate! But I will be honest in saying she has already fallen more "behind" than Judah ever was, and it seems a bit more slow-going too. However, her therapists have commented that she seems to have all the motivation and ability necessary to grow and reach her developmental goals. All they've been able to see as the problem is having "low tone" in her muscles. In just three weeks, we can already tell she is a little bit stronger and has more endurance during her exercises. She also seems *almost* ready to pull into sitting independently. So that is progress, though excruciatingly slow progress. But we will celebrate every success and know God has His hand on her little body and mind. He has a perfect plan for her, each and every day!

In other related news, we have sent in the paperwork and are waiting to get our appointment scheduled with the developmental pediatric neurologist. Although we aren't expecting any grand diagnosis or answer to the problem, we are hopeful she may have some insight or direction for Brielle.

Aside from our normally fairly healthy diet (about 50-75% organic, with lots of fruits and veggies), we have also removed most wheat, per doctor's suggestion. This tiny 18lb girl can EAT! To this day, I still have not seen her "limit". She must have two hollow legs and two hollow arms! ;)
We've actually been enjoying trying new and creative wheat-free recipes! I don't know if it's been helping or not, but I'm sure it can't hurt.

On a more personal level, it has been difficult to not play the comparison game, or the blame game, as Brielle's mother. The couldawouldashoulda thoughts creep in, and I know that A) there is a slim chance, if any, that I could have done something different to prevent anything that may or may not have contributed to her delays; and B) even if I DID do something (or not do something), there is nothing I can do to change that, so why worry?

I fight the urge to compare Brielle with other children her age (and much younger), who are passing her up developmentally. I desperately want to share in their parents' joy (and I do, but maybe not completely wholeheartedly if I were to be honest) when another child starts crawling, or walking, saying their first words, clapping and waving... my heart aches to see my daughter do all those things. My heart longs to hear her say "mama" and wave and smile and run to me.

Sometimes I just feel like we're stuck. Forever circling in a holding pattern (oh here I go with the airplane terms... yep, a pilot's wife...), wondering when we'll finally get somewhere. It's hard not to feel defeated or depleted, frustrated, hopeless, or overwhelmed. It's hard not to feel jealous of others or angry at ourselves, or worse, blame God as if somehow He is punishing us or just messing with us.

Sometimes I just want to cry out, "Really God? Again? Why are you doing this again? And why don't we have answers? Why do we have to go through this? Why are you doing this to her? Why can't we have a normal life, normal children, normal problems?"

Seriously, it's sounds ridiculous when I actually write that. It also sounds incredibly self-serving and selfish and whiney. Sigh.

I keep going back to what I know to be true. Relying on God and His security in knowing that He is sovereign and good and cares deeply for my precious daughter. He has not forgotten her, and He has a perfect plan in mind for her. It really is a faith trust season of life right now.

Just like with her brother Judah while in the NICU, I was surprised at how much our STRUGGLES were a testimony and encouragement to other people.
Isn't it supposed to be our successes and strength and accomplishments that encourage the most? Or is it seeing Jesus' faithfulness in the midst of the storm and struggle? I think the latter.

He is faithful.