Heavy Heart

Can my sweet girl just have a break.

I had tears last night as I watched Ruby seize. She had been up for hours, then she threw up and we found her in bed covered in it. Then, we got her cleaned up and she was finally settling down when she started seizing. This was a seizure where she cramped up and then cried through it like she was scared or maybe in pain.  There I sat by her side, helpless. All I could do was hold her and tell her how sorry I was that she had to go through this.

We have been experimenting with the feeding pump all weekend. Last night we gave her her evening feed and her morning feed slowly through the night. I thought this would help her tolerate it but apparently that wasn't the case.  We will keep experimenting; I often wish she came with a manual.

My heart is heavy this morning. Our reality with Ruby hits hard sometimes.

"Hear my cry for help, my King and my God, for to you I pray.  In the morning, Lord, you hear my voice; in the morning I lay my requests before you and wait expectantly." Ps. 5 :2-3

Feeding Pump

For the past couple of months, Ruby has had a hard time tolerating her morning feeding.  We have had to feed her very slowly and we always keep a towel close by, just in case it comes back up. Unfortunately, she has thrown up several times, even twice on the bus ride to school.  

I am not sure why this has changed.  She used to be able to tolerate all of her feedings just fine, in fact, I was always thankful that we hadn't had any feeding tube issues.  Now, watching her be uncomfortable when she eats in the morning makes me sad and helpless.  I also worry more about her aspirating when she throws up.  

Today, because of the advice of a good friend, I decided to call one of Ruby's doctors to ask if we could order a feeding pump.  A pump will regulate how quickly Ruby gets the formula so we can slow down her feedings.  Now, we need to hold her tube for the entire feeding; in the morning this can occupy one of us for 45 minutes. With a baby on the way, this is going to be tough for our family.  With the pump, we could set her up to eat, push a button on the pump and then have our hands free while she eats.

The doctor called back today to tell me she ordered a pump for us. Airway Oxygen (our medical supply company) will call us soon to set up a time when they can drop off the pump and teach us how to use it.  I am not looking forward to having more medical equipment in my house. In some ways, this seems like a set back. On the other hand, this should help Ruby feel better in the mornings and we won't have to worry about her throwing up on the bus. The pump will also give us more time to help the other kids in the morning.  Maybe it will make mornings less stressful. 

I used to fight for Ruby to make gains and meet developmental milestones. Now, I fight for her to be happy, healthy and content.  This may seems like I have thrown in the towel, but that is not the case. I think God has just taught me to be content with where she is at.  Most days I accept what is and find joy and peace in daily living.

If the feeding pump improves Ruby's quality of life and helps us keep the stress down at home, then bring on the feeding pump!

Time Away

All moms need time away from their kids. This is especially true for special needs moms. Therapy, meds, doctor's appointments, feeding tubes, drool, sleepless nights…these things are exhausting and can make me feel tired and alone.

Sometimes, I am able to get away for a night with my husband. This is great and necessary, but can be tough to schedule because we have to find someone to watch our babies. This past weekend, Mark stayed home with the kids, and I was able to sneak away with two other moms of special needs kids.  What a blessing!

For 28 hours or so, I didn't have to feed anyone, change diapers, crush pills, clean up puke, play rescue, or watch Cailou. Instead, I was able to laugh, listen, vent, eat good food, get a massage, sleep through the night (this was incredible by the way :) and connect with women who truly understand where I am coming from because they are dealing with similar things at home.

I LOVE being a mom, but once in awhile, stepping away from this role is so healthy.

I thank God for putting these women in my life!

Announcement

Wow-- this post is LONG overdue.  Life has a way of flying along and my blog has been neglected!

One MAJOR reason I haven't felt up to updating my blog lately is because of some exciting news at our house.  That's right, we are pregnant!

Mark and I are thrilled to announce that we are expecting baby #4 in early July.  We thank God for the gift of new life. I have been feeling okay, tired and queasy, but okay. Mark has been a trooper in picking up the slack and letting me sleep more than usual. I'm in the middle of week 13 so hopefully the yucky feeling is gone soon.

Another piece of news…we are also making plans to build a house for our family. Hopefully late this spring we will break ground on a handicap accessible house. We are very excited to have a space that will meet Ruby's needs.

Between the house plans, the holidays and pregnancy my blog has fallen by the wayside. I hope that will not continue to be the case in 2014.

Happy New Year everyone!

ABR Trip

About every six months, Mark and I take Ruby for more ABR (Advanced Bio-mechanical Rehabilitation).  We usually go to Montreal, but this time we decided to try the ABR satellite in Pennsylvania.  

Ruby was an angel in the car. Even so, she was glad to stretch out on the hotel bed for a 

few minutes before her evaluation.  

The photo session and evaluation went well.  We are always encouraged to see the positive changes her body has made.  Again, we feel strongly that this is exactly the therapy Ruby's body needs to heal. ABR is helping her body to "re-build"; it strengthens her fascia, segments her joints, creates space between her vertebrae and stabilizes her skeletal structure.  If any of you reading this are ever interested in ABR, please ask me and check out the link above.  

Specifically, here are the improvements Ruby's body has made in the last six months according 

to the evaluation we had tonight:

- Spine connection between the thoracic/lumber and the lumber/sacrum has been strengthened

-Improvements in head counterbalance (if she gets tipped to the side, her head doesn't 

completely flop anymore) and some improvements in head control. They assure us more head control is coming and we are very excited for that!

-Increased stability of the shoulder girdle (shoulder blade) which will allow for 

weight bearing on her elbows.

These things may seem small, but they are completely necessary for her body to function more normally. We are rebuilding her body one muscle, one ligament, one joint, one vertebrae at a time. This all takes time, but these changes are permanent and will continue to give Ruby more function. 

Tomorrow we have two sessions where our trainer, Fehim, will explain the 

new exercises we need to work on for the next six months.  I am eager to hear what changes in her body we can expect next.  

Thanks for your support and prayers. Thanks also to those of you who donated to Ruby's fund with the Thirty-One fundraiser. This trip is possible because of that fundraiser! 

We praise God for the community of believers that surround us.

Respite

Tonight a wonderful woman, who knows kiddos like Ruby very well, sat at our house and cuddled Ruby while Mark and I took the other two kids to the park.  It was a blessing to run around with friends in beautiful weather, knowing that Ruby was content at home getting snuggles and getting to bed on time.

After a good meal, meaningful conversation, a walk by the lake, a kid's dance party in the park (literally) and a lot of toddler giggles I feel blessed.

At the end of the evening we treated Tabatha and Charlie to frozen yogurt with candy toppings, even though it was past their bedtime. Every good night finishes with ice cream, right? :)

Tonight was a gift.

Tough Day

Most days, I feel peace from God about our situation with Ruby.

Once in awhile though, fear, frustration and anxiety about the future slip in and rear their ugly heads. Today was one of those days.

Ruby started off the morning with a seizure. Yuck. You all know how I feel about seizures; I HATE them.  When they happen, my poor baby's body is being tortured and I get a front row seat. We used to be able to protect Tabatha and Charlie from seeing these, but this morning they were both fully aware of what was happening.  As soon as it was done, Charlie asked, "Is it better? Are you better, Ruby?" So sweet, but a four year old shouldn't have to witness this.

A few hours later, Ruby vomited her whole feeding. She is tube fed because she doesn't handle liquid well. You can imagine what a whole bottle does to her system when it comes back up. She was panicked and she couldn't swallow or breath. We ripped her out of her chair and Mark started pounding on her back while I tried to suction her out with a bulb syringe.  I thought I was going to have to call 911. Thankfully, soon she started crying. It was such a sad cry, but at least the crying meant she was breathing again.  Aspiration is such a real threat to Ruby; today just reminded me of that reality. 

The rest of the day she was tired, but okay. Mark stayed home from the Pumpkin Festival parade to sit with Ruby.  It's frustrating when our family has to split up; I would love to always do those fun family things together. 

Today the frustrations of our reality set in. Like grief, it kind of hits when you least expect it. It's good to vent, pray, cry, be quiet and then move forward again. 

God is still faithful; God is still good. God is still in control.

We continue to pray God will give us the feet to walk the path He has in store for us.