Respite

Jeremy and I have come to learn that having a special needs child means having to ask for help. Help is hard to find. A teenager in the neighborhood is not equipped to watch him. Getting out just to run errands can be a challenge, let alone Jeremy and I go out on a date. It can be overwhelming and extremely frustrating (I have blogged about this is the past, Help Wanted).

Thankfully we have some help through a waiver available to special needs children in Virginia. First we had an attendant, now we have a nurse. Still that does not mean our life is not complicated and hectic. Brayden is being well taken care of but it only covers the basics for us like the ability to run errands, tending to Carter and Luke and their school activities.

Yesterday, Jeremy and I had the opportunity to meet with director of Jill's House. The facility is the first of its kind; a place for overnight respite care and therapy programs. The building is such a special place and made for the children to really enjoy. With outdoor themed wings, sensory rooms, music room, swimming pool and so much more. The facility is planned to open sometime in the fall. Check out their webpage, Jill's House and facebook (watch the videos, they are good).

Where do you find your help?

A little update

The bed - Brayden is officially sleeping full time in his new bed. He really likes it. The mattress feels memory-foam-like so it nestles him in nicely. He seems to enjoy not staring at the crib bumpers. I have found him gazing towards the light of the window.
Jeremy and I broke down the crib...I had a little break down...the crib no longer a part of our life.

The diet - Brayden has been tolerating the ketogenic diet fairly well. His small daily seizures seem to be decreasing. However the moment I start to think that, he has a bad seizure day. But overall they seem to be less. His GI system does not seem to be aggravated by this new diet; just a few small things and we checked with his GI doctor and there is no concern. The formula mixture that we make (Ross Carbohydrate free formula, Elecare, Microlipid and water) seems to clog his g-j tube a bit so we need to flush his tube with warm water more often.

The nurse - Brayden now has a full time at-home nurse. She is with us about 40 hours a week. Brayden has already taken to her because the first day he got some good cuddles. We may also have someone with us over the weekends.

We have lots of other exciting things going on but I will be back to talk more about it later!

The fancy new bed

Brayden's new bed arrived. It is a hospital bed made to not look like a hospital bed, the Sleepsafe bed.

Brayden had a test drive in it. The entire bed can go up and down; head, up and down; feet up and down. It also has the rails on the side to keep him safe.

He will be sleeping with his head only slightly elevated, not as much as it is in the picture...I just had to try it out!

We have waited many, many months for this bed (insurance denials, lots of letters from doctors, etc.). I have not even purchased any bedding for it yet (the picture just shows the mattress). So Brayden is sleeping in his crib until I get it situated.

Anticlimactic Birthday

We did not prepare much for Brayden's birthday. For anyone that knows us, we do big birthday parties...we love parties. About a week before Brayden's birthday, we decided to have a party. We invited our immediate family for dinner at a farm.

Carter and Luke were a big reason for the party. They wanted Brayden to have a party. Their thoughts:
Carter: Who will open his presents? Well, Luke and I can help.
Luke: Will he have cake since he is allergic? (Luke's version of why Brayden cannot eat by mouth)
Carter: Who will blow out his candles? I can do it, so can Luke.

The party day came. The wind was ferocious and cold. Everyone was huddled inside the old farm house. The ponies arrived. The children were outside riding. I was taking pictures of the children on the pony rides and then I walked back to the house. Brayden was totally alone in a room, just sitting there quietly, everyone else was busy with the party. It broke my heart. He was at his own birthday party but NOT at his birthday party.

I have no other deep thoughts about it, it just made me sad but still happy to celebrate his 3rd birthday.

Ever have a day when you are blue? Or purple?

I got a call this morning from Brayden's school nurse. She wanted to check and make sure Brayden was doing okay. The nurse was concerned because he was literally looking blue.

Do not adjust the color on your screen. His feet and hands are this color...blue/purple.

Some days he does not have proper circulation. It is like his brain does not seem to be telling his body to get blood to his hands and feet. Then when it does, it seems to over compensate and pump so much blood that his hands or feet get really swollen and red.

It never looks good and it always concerns people (especially random strangers in stores who like to offer their insight). We try to rub his hands and feet to help. It is not about him being cold or hot. Without any known cause he has days when he is fine and others he may be purple or red. We have talked to all of his doctors about this and they have yet to offer any insight.

Happy Trails, Happy Birthday

Brayden celebrated his 3rd birthday (bear with me, lots of pictures). A party with family at Grandpa Warren's new farm. The old house is in the process of being renovated but still provided good shelter from the cold winds. The kids did not seem to mind the cold. Some rides on the ATVs and lots of pony rides. Brayden attempted one circle around for a pony ride...not too thrilled with it.

He was trying to check out his cake.

Then checking out a present.

It was a nice 3rd birthday. Luke came home and declared that it was the best kind of party and he was going to have all his parties there.

Bring in the noise

Brayden's 3rd birthday is Saturday, April 17th (pray for good weather because the party is outside at a farm). Today he celebrated his birthday at school.

I am usually ready to send something into the boys' schools to celebrate birthday...usually some cupcakes or cookies. But what to send in for Brayden's class (since he does not eat by mouth)? I found brightly colored maracas! Most of the children like to make some noise! We tied a little message and sent them to school!

The teacher let the children choose their color. They sang Happy Birthday and For he's a jolly good fellow for Brayden!

Registration

Kindergarten registration for Luke, the middle child. Why am I blogging about this?

Here is the story...

We live in a small town, part of Northern VA. We have a very small elementary school with limited capacity. A few months ago, a rumor was circulating about the upcoming kindergarten class. There is only room for one class, about 25 children. Based upon the survey of our town, there are approximately 40+ children eligible for kindergarten. What happens to the children that cannot fit into the elementary school? In the past they have been bused to a neighboring town for school.

I must admit I panicked a little when I heard this rumor. So I called the principal. I told her the information that was being passed around. Basically she would neither confirm or deny the circumstances but did say that there was a concern because the school was reaching capacity. She told me that registration day was important...to be there early with ALL of the paperwork completed. She did not tell me how they would be making decisions about the amount of children.

Registration was at 9:00 a.m. yesterday. People started lining up at 6:30 a.m. Luke and I arrived about 7:45 a.m. and ended up about 12th in line.

So back to why I am blogging about kindergarten registration...

First, I cannot have all three of my boys at three different public schools. Carter in Waterford, Luke in a neighboring town and Brayden in Leesburg for special ed. I cannot do it.

Second, I had no idea how valuable it was to be in our local school. I really know the teachers, staff, children and parents. There have been countless times that some incident happened with Brayden and Carter (who is currently in 1st grade) had to go home with someone else. His teachers and the parents know our circumstance and have been incredibly helpful. I know that even if some emergency comes up for Brayden, my boys will be okay and will be close by.

We will not know much about the kindergarten class for next school year until August. I have done everything I can to ensure Luke is at our local school. I talked with the kindergarten teacher and the school principal about why we needed Luke to be in Waterford. For now we just wait.

Luke is thrilled about kindergarten. He so desperately wants to be there and ride the bus with the kids in our neighborhood. He was so excited about registration that he even let me take his picture (he is more excited than he looks, he carried that paper around all morning).

3 year check up

Brayden had his 3 year check up this morning. He is growing! Some where around the 50 percentile for height and weight. He was not too pleased with being examined or getting a shot, apparently it wore him out because he slept most of the day.

Luke joined us this morning because he had his 5 year old check up (a few months late but we finally did it). In preparation, he dug out the doctor kit and gave Brayden a once over while I was loading the car.

The ketogenic diet seems to be going well. I am still getting the hang of things...hoping to pick up some speed because right now everything takes me too long to prepare. We measure out this concoction of different things to make his formula for the day, check his blood glucose three times a day and ketones (urine dip stick) 1-2 times per day, in addition to all of his other needs. The diet does not seem to be aggravating any of his GI problems. As for seizure control, only time will tell...about 2ish months before we may see an impact on his seizures but the doctors cannot really say how long.

Home, last night

Brayden was discharged last night.

He was discharged at 5:00 p.m. The worst possible time for DC metro area traffic. Brayden and I were in the car for almost 2 hrs 45 minutes before we pulled into the garage. Brayden just seemed happy to be out of the hospital.

He is home.

His hospital stay was mostly uneventful. He tolerated the ketogenic diet fairly well. A few things that we need to check on but nothing too bad.

Brayden seems to have a seriously low heart rate and pulse ox several times during his sleep. Thankfully he is able to recover on his own but a few times they did put him on oxygen. We will talk to his regular doctors about this since it does not seem to be ketogenic diet related. He lipase levels (pancreas) are elevated but not sure if that is normal for him so we will visit the GI doctor.

He was stuck so many times for blood that it looked like Luke played doctor and covered him with band aids. Just about every nook and cranny was used for blood. Brayden only fussed for a moment with each stick...apparently getting too used to it all.
Last night and this morning was my first go at the measuring of the diet, glucometer and ketostix. A little stressful trying to figure it all out because this diet is so precise. We had a nurse out this morning to go over things and check him as well. So far so good but I am hoping that I will get the hang of things quickly.

How I do hospital stays...

Jeremy stays the night with Brayden. He is gifted with the ability to fall asleep just about anywhere and go into a deep sleep quickly. I arrive early in the morning before first rounds and stay the entire day. Carter and Luke are at school and home with grandparents taking shifts.

After several hospital stays, I have a few tricks up my sleeve to make it a little bit more bearable for me...

1. Magazines - they do not require much thought or attention span, since I am lacking that when lacking sleep.

2. Book - just one easy to read,usually off the bestseller list but I make no commitments to reading it all if it turns out to be boring.

3. Blackberry - I used to make fun of Jeremy (and all other Jenkins) who cannot function without theirs, mine is my new best friend and contact with the outside world.

4. Starbucks frappuccinos in bottle - our frig is full stocked with these. I have never been much of a person who needs caffeine but these are too good to resist.

5. Laptop with remote access - Yes, I am sitting here typing on it right now. I watched old Glee episodes, checked others blogs, read a couple of newspapers (the style sections), etc.

6. Gum - some how hanging out in a hospital room gives you cotton mouth.

7. Camera - do you need an explanation for this one?

8. A new addition is...

Mary Kay TimeWise Targeted Action Eye Revitalizer, claims to diminish dark circles and depuff. A stay at the hospital is a true test for this product.

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9. Money for the cafeteria and parking garage.

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10. Toys for Brayden and things from home for him.

Ever feel like you are being watched?

Brayden does.

Besides mommy and daddy hovering over him, the staff on the neurology wing are watching him closely.

At this Children's neurology wing (apparently not any other wing yet) cameras are in each room. The cameras follow the children throughout their room. A tech sits at a station 24/7 watching the children. Brayden is being watched closely for seizures. Kind of strange having a camera in the room...so no nose picking or making out with Jeremy (I know our families just cringed a little).

The monitors alarm to big seizures, which he had a couple today. His stats go crazy and several people rush into his room.

Brayden's blood glucose is being watched. This diet can alter it, he was pretty low this morning but got better throughout the day. His diaper has an extra pad in it to ring out the urine for a sample to check his ketones. Bloodwork is being done each day to monitor him and to watch closely his Lipase levels which is a cause of pancreatitis (which he has dealt with in the past). His lipase levels have been elevated but not too high.

Children's is a teaching hospital so Brayden is watched by medical students, resident, attending and fellow doctors. And the nursing students, nurses and techs. A dietitian (who will facilitate this diet in the hospital and out) and her intern. A case manager to set up all of his new gear at home.

The proper diet is slowly being increased to see how his body tolerates it...so far no major problems.

His sweet chubby feet that kick and make the monitor go off.

New diet, new hospital room

Brayden has officially been admitted to Children's National today. He will be there for the majority of the week to start the ketogenic diet. While the diet is primarily for seizure control, Brayden's GI issues cause concern and will be closely monitored for any red flags.

He was started late this afternoon on a mixture of the food he will get via j-tube and will work up to the proper ratio.

Tomorrow, we will be trained on how to carry out the diet at home, as well as the tests to monitor him.

We have been to this hospital many, many times; inpatient in the old GI wing and many outpatient procedures...this is the first time on the newer neurology wing. Brayden has a large private room, with private bathroom, two recliners and a couch (still the hospital like but better), a flat screen TV...need I say more. It is a far cry from his other hospital stays at Children's. He can even wear pajamas instead of a gown.

Brayden has been very compliant all day, not much bothering him.

Tomorrow is Easter

Jeremy's family is gathering at a local restaurant after our Easter church service tomorrow. I received the email this week about when and where; when I read the email I cringed and my heart sank. No, not because of the restaurant choice but because of a memory.

I immediately thought of the last time we were there for the Easter meal. Brayden was 11 months old. I was nursing 6-7x a day for an hour at a time. We were in the battle for him to gain weight because the decision of a feeding tube was looming (he got his first feeding tube at 13 months).

That Easter, we arrived at the restaurant. It was time for Brayden to nurse, yet again. But he was asleep.

He is my third child. I have learned...do not wake a sleeping baby. Not just for his sake but mine; nursing that many times a day leaves one very hungry.

We loaded him into the stroller...still sleeping. I thought I would be able to eat quickly and then nurse him. Once we entered the restaurant, someone woke him up by poking at the sleeping baby. He woke up upset and hungry.

I scooped him up, said something not kind to those around me and stormed out to the car. I could not nurse him out in public because he did not curl into me like most babies do and required more space than a hooter hider would hide anymore.

That was a moment for me. A moment when I realized that I could not handle it anymore. I was tired. Tired of nursing, sitting in the car alone to nurse, dealing with all of his special needs, of fighting and praying for weight gain. It was a breaking point for me. I felt ugly and broken inside. I wanted to snap at everyone because they were not dealing with what I was dealing with and they did not seem to understand.

I sat in the car, angry and had a full on pity party. Easter is a family day and I was alone in the car with my broken baby and my broken spirit.

What comes to my mind? A hymn that I grew up singing on many a Easter morning.

He Lives!
Alfred H. Ackley, 1887 - 1960

I serve a risen Saviour; He's in the world today.
I know that He is living, whatever men may say.
I see His hand of mercy, I hear His voice of cheer,
And just the time I need Him He's always near.
Chorus:
He lives! He lives! Christ Jesus lives today!
He walks with me and talks with me along life's narrow way.
He lives! He lives! Salvation to impart!
You ask me how I know He lives? He lives within my heart.
Stanza 2:
In all the world around me I see His loving care,
And though my heart grows weary I never will despair.
I know that He is leading, thro' all the stormy blast;
The day of His appearing will come at last.
Chorus:
Stanza 3:
Rejoice, rejoice, O Christian! Lift up your voice and sing
Eternal hallelujahs to Jesus Christ, the King!
The Hope of all who seek Him, the Help of all who find,
None other is so loving, so good and kind.

Breakin' up is hard to do

Today was the last day for Brayden's attendant. She has been with him for just over one year. Brayden quickly took to her and figured out how to get her to cuddle him (a fake cry to get what he wants). He likes to rest on her shoulder. Brayden knows how much she loves him (and he has taken full advantage of it).

Brayden and his attendant enjoyed some quality time at the park today.

Brayden will now how full time nursing care. It will start after he comes home from the hospital stay.