Celebration of Life

This post has been transferred from Abigaile’s Story Journal.

It is a rather bittersweet time. My husbands birthday is today. I remember his birthday not only because it is the same day as mine but mine is February.

I also remember this day because 13 years ago on April the 7th my daughter Abigaile was not doing so well.

We had some friends over and were doing a Bible study. We were playing music and having a really nice time. Abigaile was 5 months old.

She was in her little bouncy seat with a pacificer and was jumping around a bit to the music. I was glad to see her in such a good mood because just a couple of days before I had taken her for her well-baby visit. At that visit she had her immunizations.

She had been crying and not in the best mood she also wasn’t sleeping well.

I attributed this to getting her shots and felt in a couple of days with motrin or infant Tylenol it should go away.

While I was playing on the piano I heard this strange noise. I asked my husband to check on her on the sofa she was just a few feet away.

When he looked at her she was stiff and rocking back and forth and making a gurgling sound. Initially we thought maybe she got choked on her pacifier. We looked and the pacifier was intact. We looked around to see what she could have gotten choked on and couldnt find anything. She was gurgling even more. Her skin started turning grey. Then she turned blue. I had her on my left arm doing CPR and had the phone in my right hand calling (9-1-1) the EMS came and she was fine. We decided to take her to the hospital anyways to make sure she was okay.

Of course when we got to the hospital she was fine.

Oh my goodness, what just happened?

I started charting everything that she did, the things she wasnt doing.

Two days later the same episode played over again and her eyes started darting. Again, she went by ambulance after stopping breathing.  This time the ER Dr. that was on call asked if he could pray for her.  He was the clinic owner of where our Pediatrician was at. He knew Abigaile was serious. We had the gamut of labs, then straight to the Trauma room.

Our Abigaile wasn’t there, she was out of it. She had her eyes open. Her eyes darting back and forth. Her little body rigid. They did nothing. They observed her. The next ER Dr. came in. He shook his head and said there is nothing that can be done right now. He left the room.

We said that we put our trust, our faith and everything we had in God. We dropped to our knees in the middle of that dirty ER Trauma room floor. Im sure we were sobbing. Our oldest daughter 5 at the time started running a temperature when we checked it, her temperature was 104.F.

We kept praying.   Eventually the ER nurse on duty came in and said they would be admitting our daughter. That she was having seizures.

A few hours later we were assigned a private room. We called every pastor and member of every church that we knew. We called missionaries we called every one and asked them for their prayers over our little girl. We were heartbroken. We really didnt know what to do. We just knew we needed to pray.

Our little Abigaile her body was swollen. She didn’t really seem to come out of the seizure. They gave her Phenobarbitol by IV and it made her worse. More seizures. Uncontrollable seizures.

We were discharged 2 days later.  We had orders to continue the Phenobarbitol that wasn’t working as well as a couple of other meds I don’t remember.

Our orders included from her Pediatrician were to be admitted to Arkansas Childrens Hospital.  With our daughter in a constant seizure pattern we know realize they should have air-lifted her. God was protecting her.

This was back in the day when the constant road work was being done on the I40 Interstate between Alma and Little Rock. We drove from Northwest Arkansas over the mountain the only place where the John Paul Hammerschmidt Highwas was complete.

We got to I40 and this was after my husband had worked all day so then we ate dinner and I drove it seemed all night. I mapped on the Rand Mcnally ( we didn’t have GPS then) the little hospitals along the way. They may as well have been nursing homes. I thought if we got stuck and our daughter was not well I would stop at the hospitals and at least they could air lift her to childrens.

It took almost 4 hours because of construction. We got a hotel that night and then the next morning went to our visit with Dr. Lange at Arkansas Childrens. She saw our little girl, held her and then had the Geneticist to look at her. She ordered an MRI and had her admitted. They took her vitals, weight and height. They were astonished at the size of her head.

We went through multiple tests. She even had a spinal that I was told to leave the room.

She was admitted to ICU and they sedated her brain to stop her seizing.  She was sedated for over three days when they concluded she was able to come out of sedation and was put on a different seizure medication called Topomax. A day later she was discharged. While we were driving back to the hotel she got choked on a teething ring. We stopped at another hotel and called 9-1-1.  By the time the EMS got there it was already dislodged and she spit out the bloody piece that had choked her. We thought initially she was having another seizure but instead she was choking.

One day I will write a book about this little girl of ours. She is a truly a miracle from God.

The Dr.s said that she would never walk, she would never talk, and she would likely be in a “vegetative state”.

One thing I can say about Abigaile is she loves everyone, she loves everything and she even loves her “vegetables”. ( cheeky grin)

Doing Physiotherapy

I am thankful my husband has another year has been blessed by God. Im thankful my Abigaile has lived another year that has been blessed by God.

She still has a very long way to go but I am certain that God has brought us this far and I know that God says He will never leave us or forsake us.

I take God at His Word.

God bless you all thank you for your prayers.

Paris ( mommy of Abigaile ) xoxoxo

 

The Beachnest

Blue Bluebird Wanderlodge and White Mercedes Sprinter Van

2014 The Grapevine Flood Grapevine, Texas @The BeachNest and The RoadRunner

The Beachnest.  A 2000 LX 40 foot Wanderlodge. Truly this is a blessing from God. We didn’t buy it. We didn’t pay for it. It belongs to God. It was purchased from a special needs medical trust for our daughter that resulted from her injuries.  If anything were to happen to our daughter we would be required to sell it and place the funds back into the trust. This bus is to be used for her lodging for medical purposes while doing treatments and therapy. We would like to actually purchase it one day.

Right now though we could not afford it. We have put a lot of modifications for special needs and special modifications for our daughter. We have taken and will continue to take out things that trigger allergies or anything that could be contraindicating for her daily activities or daily care. I would much prefer that we own it but that isn’t how God allowed it to happen for now at least. We own nothing. We do have some items in storage but thats another post for another time as those items are ruined and should have a claim filed on them. Its simply one battle at a time.

It has been much easier managing Ladybugs care having less stuff. It has been much easier not trying to keep up with an employer who you can’t take off simply because your child isn’t doing well.

I thank God that FedEx was so good to our family when we were taking off so much time I don’t know how my husband left there without losing his job.

Other companies he has worked for has not been so nice. Not understanding. I understand they have a business. Im not sure they would react the same if it were their child or family member.

I looked off and on for almost 5 years or more at Rvs. Travel trailers, etc I love them. I’m not sure why. I especially like the vintage ones. I am a huge fan of airstreams. If we had not had special needs Im sure we would have been a full timing air streaming family.  To me the airstream reminds me of a really cool interior of a leer jet. What is there to not like about this ?

cool airstreams

However, the Wanderlodge reminds me of the interior of a land yacht.  The quality of both is just really awesome.   cool modern Yacht.  Ok I could do better with a different Yacht but its the quality and the home on wheels.

I found a lot of buses and Class A’s. That is what we narrowed it down to that if we were to need to stay in the bus for RV for months at a time. We do therapy for a series of 3 months. We do treatments at that same time. We do 6 hours of therapy then leave the therapy and go straight to treatments for Hyperbarics. That is usually an hour. Then it was an hour drive home. It was typically an 8-10 hour very long day. Then to home, showers, bed and back up and driving again the next morning at 7 to be there again.

Its beyond difficult to get vacation rentals for more than a couple maybe a few weeks at a time. Its even difficult getting a hotel due to tourists and in California people near the beach cities rent a hotel room or several rooms and have their friends and family come over to party. Its crazy. I was also amazed at how many people rent hotels for months to remodel rooms in their homes. We met families who had house fires. And impossible to get a hotel on the Fourth of July near the beach cities.

So we decided because of the job situation and we had yet another landlord when we lived in Phoenix that their house sold while we were living in it. Im telling you if you have a nice home and you want it sold just let us live in it. We rented 4 homes and they sold while we were living in them. It is not easy for us to move.

I found as many Wanderlodges, Eagles and MCIs as I could of a huge variety of price ranges. I looked at hundreds of each online to see layouts, gas and diesel, towing capacity, sleeping arrangements, storage as well as location and prices. This is intense. When one goes on the market at a decent price you have to move quickly or its gone.

So, we saw where they were located and made a list. We had already gotten one extension for rent but was unable to find another. This would be a good time to go look. So we planned our trip put our things into storage and took the Roadrunner. We stayed in hotels along the way. Our gameplay was to look especially in the Memphis and Nashville area for Entertainers. Thank God one of my dear high school friends Jay Singletary was able to get us a tour of a very nice Hemphill Bros. through one of his friends. Yes, we saw some rock stars coaches. WOW! They were gorgeous (some of them) but way more than we could spend. Thank you Jay you rock! Hemphill coaches- Wiki also check out their website. They have some really gorgeous coaches. Our tour was incredible. The service and knowledge is fantastic. I can’t say enough about how we were treated at Hemphill. Hemphill Brothers.com

We met tons of awesome people along the way. We looked all the way to Memphis, Nashville and finally found 2 Wanderlodges to look at in Missouri.  Did I mention we saw Elvis? LOL Invitation to Elvis Presleys mansion

While in Missouri one of the Wanderlodges  had a slide we really liked it. It was bank owned and had water damage in the slide ( we didn’t like all the water damage). We were also leery of buying bank owned without knowing maintenance or repair records etc.  We opened the bay door and water gushed out it hadn’t rained in two days.

We met the people who owned Dr. Scholls bus. You know the “foot people”. I really thought we would buy that bus. I love the table loved so many things about it. It was the first bus we saw. The people who owned it I liked even more than the bus. They answered all of our questions we drove it twice. I just didn’t want to buy the first Bird that I saw and thats what I wanted to do. We all liked it a lot. Great shape too.

SO we ended up in Missouri. We stayed south and in the Midwest. We looked at the bus with water damage it would have cost a lot to remodel and get that bus in shape. With being a bank repo we had no idea what was in store on it. It smelled like mold and it really was an M380 with a slide. We went to look at another Wanderlodge that we found through a broker online through Vintage Bluebirds. We set up a time to meet with the owner. We looked at this bus (this was after looking at many other buses). We knew this was going to be our Wanderlodge. We drove it. It was 15 years old and a Blue Bluebird Wanderlodge. It was also in very good condition. We have had to do some changes. We had to put new tires on. Oh my I will never, never complain about buying shoes for my children again ever. The shoes for this bus. WOWEE !! It is a gorgeous bus. We made some changes right away and took the bus to Georgia to Coachcraft by McDonald to get the bus inspected for leaks, and some general maintenance. We had some modifications we wanted done but because of funds and a Bluebird rally they didn’t happen right away.

In 2-3 weeks on the road, fairly no-stop we found our Bird.

The first time at Coachcraft we had the Mimmi with us. We stayed in a hotel. Mimmi saw a whole new side to us. Hahah. She loved having the food bar and coffee ready on demand all day. Then we took her to Myrtle Beach, Charleston and Savannah with us. She got so tired of us she got on a bus in Myrtle Beach and went back home to Missouri.

So we scheduled for a later time. While we were waiting on approval for funds which we thought might take a couple of weeks ended up being months. This was a huge issue for more than one reason. There were things we wanted Coachcraft to do and while the Bird was in the shop for those things we wanted to do some things our self. We planned a budget, found what supplies we needed and priced where we could save a lot of money. This is also so we could get what we wanted and not just stock from a book or a catalogue.

While waiting for an okay for funds. We decided to spend some time in Myrtle Beach, SC., Charleston, Georgia, and even went to Fl. for a Dr. appt for Ladybug and my husband was able to spend time with his mother for Christmas. While doing therapy in Fl. we stayed at the KOA Orlando. We finally got notice that the funds were cleared and we were scheduled to get the work done as soon  as therapy was over.

We were able to take a truck and go to Atlanta to purchase all of the items we needed on 2 different occasions. We also shopped Ikea. We also were able to find a really awesome discount tile store and bought ceramic wood look alike tile for the bus. We then had to spend time in Georgia ( I love the folks we spent time with they are the nicest people ever at Coachcraft) but I am not a fan of Georgia. The state of Georgia  has a new kind of hot with the worst humidity ever. The mosquitoes have their own zip codes. Its awful !

Ill add more photos later and the next post will be the updates and modifications that were done on the Wanderlodge. We wanted to be able to spend some time in the coach before we made a lot of modifications. We wanted to price shop. We wanted to save as much money as we could. Im thankful we spent the time like we did so we could live in our coach and get used to how we would live in it. What I initially thought we would do ended up only doing some of those things. Its a lot different planning for a child with special needs and planning and modifying things around the daily activities.