Gage's testing

Gage survived his tests although it took the best of him.  We arrived at 7am and they put us in a Mavericks room...was very impressed by this hospital which is one we had never been to before.  There was a Wii set up for him to play so immediately he started playing.  The nurse put a numbing patch on his arm before placing the IV.  He got really scared when he saw the needle for the IV and cried a little.  He did not feel it though and was happy to learn that they would not have to stick him anymore.  The nurse took blood and then gave him a medication through his IV. He was not able to play the Wii with his IV in so he watched some Scooby Doo videos. She came back and took blood 30 mins later and then had him swallow 3 tiny pills.  He has never swallowed pills before but did great.  He was getting bored of watching TV so we read books.  She came again in 30 mins & took more blood..waited 30 more minutes and then took blood again.  She then wanted him to swallow 2 capsules.  Really?! He's 7! It took some time (and crying) but he finally got the 2 pills down and was NOT happy and ready to leave the hospital.  The first med had kicked in and he was getting sleepy, cranky, and hungry. I layed down beside him and he went to sleep in less than 5 minutes.  The nurse took blood 3 more times in 30 minute intervals and he slept through it all. ;)  He finally started waking a little when the nurse said she just needed to make sure lab got all they needed and then we would be free to go.  We were released about 1:30pm and Gage was not looking good.  I had to carry him to the car and his lips were white and face completely pale.  He immediately fell back to sleep in the car and every once in awhile would cry out that his stomach hurt.  He had requested Sonic so once we got his food he ate maybe 5 fries and drank a little of his chocolate milk and went back to sleep.  He slept the whole hour car ride home.  Once home he started perking up and went upstairs to play...about 30 minutes later I went looking for him and could not find him and he was not answering when I called his name.  On my 2nd search of the house I found him sitting on the floor in the playroom.  He said he answered me but it looked as though he had been sleeping so I brought him downstairs.  He cried about his belly more but refused to eat or drink anything.  He fell back to sleep from about 5-6:30pm and finally ate and had some energy back to play on the Wii.  It was pitiful to see him that way because he's always so energetic and talkative.  By the next morning he was back to normal Gage! We go in 3 weeks to hear the results.

Gage

I thought I would send an update about Gage.  I took him for an x-ray of his bone age and then we had an appointment with his endocrinologist to talk about it and get bloodwork done to get his growth hormone levels.  Well, the bone age showed his age about 5 instead of 7 which is not too far behind but tells us that he could very well have a growth hormone defiency and that he may not have a delayed growth spurt later in life.  The dr. & I talked about all the issues and I made it very clear to her that we are COMPLETELY fine with his small stature if it's just a genetic issue and not a health issue and that we would only do growth hormone therapy if it's proven to be a health issue and not just a size issue.  Gage is fine with his size and if he wanted to do growth hormones we would consider but he does not.  We feel God made him just the way He intended (just like He made Autumn) & we accept it unless it's causing a health issue for him.  The dr. wanted to get his bloodwork to see what it showed and also wanted to schedule a stimulation test to be done as well.  I was not for the stimulation test since it's an intense test & I did not want to put him through it if it was not needed.  So, we headed out to get his bloodwork done and I was going to wait to schedule the stim test depending on the results from his bloodwork.  Well, the bloodwork showed his growth hormone levels were slightly low but it also showed his cortisol levels were low as well.  So, the dr. said she wants him to have both his pituitary & adrenal glands tested.  So, Monday night we will fast Gage starting at 9pm & Tuesday morning we have to have him at the hospital by 6:30am to start the 4-6 hour test. They will put in an IV and then give him medication to see if his glands respond how they should to the medication.  They will take blood levels every 30 minutes for about 4 hours.  The medication could cause him to become sick to his stomach. ;(  It should take about 2-3 weeks for the results to be ready & then we will meet with the dr. to discuss the results and options for therapy/treatment if needed.  I really hate going through all of this with him but at least we will know for sure if there is any medical issues that need to be addressed.  His last endrocrinologist who wanted to start him on growth hormones never wanted to do any testing which made us so uncomfortable so I'm glad this dr. is pushing for proven medical testing instead of just looking at a growth chart to recommend growth hormone therapy. Please keep Gage in your prayer on Tuesday & I will try my best to update on how it went & results when we get them.

Our Beach Vacation

We had a wonderful vacation in South Padre Island and we were so sad to leave & come back home.

We rented a BEAUTIFUL beach house right on the beach with it's own private pool.

Okay, the pool was SMALL but perfect for the kids to play in while we unloaded or at the house relaxing.

My brother, niece, nephew, and Gage getting into the water the first day. We got there late afternoon so the kids swam while we unloaded. Uncle Chris then took the kids to go for a quick dip in the ocean before frying us up some yummy food for dinner.

The next morning my SIL watched Autumn so the Madison, Gage, James, and I could go horseback riding on the beach.  It was so much fun!

Me on my horse...

it was nice to take them into the water and they even allowed us to do some trotting down the beach.

Family Photo

After our riding adventure we had lunch and then the Reed's (my brother's family), the kids, and I went on a snorkeling adventure while James stayed home with Autumn.  Gage is a fish...he snorkeled the entire 55 minutes and LOVED every second.  I'm so proud he's such a animal lover and water person just like his momma!  Madison was NOT thrilled at all of the thought of snorkeling and could not breathe out of her mouth so she got in for less than 5 minutes and gave up. :(  We only saw 3 types of fish but it was still fun. 

The next day the men went deep sea fishing while Jen & I stayed at the beach house with all the kids.  We decided to spend the morning taking all 5 kids to the beach...it's lots of work taking a trach child in a sand/water filled area.  It took us about an hour to get it all set up and ready to bring Autumn down.

Autumn was in her tent to keep the sand from getting to her.  We attempted the ocean for about 10 minutes.  The waves were so strong we could only put her in her floatie faced away from the ocean at the edge and everytime a wave came in I would have to lift the floatie up with it to prevent the salt water from splashing into her trach.  For extra protection we put a hankercheif around her neck to prevent sand from blowing into her trach as well.  She had fun splashing her hand in the water and then hanging out in her tent reading her book and sunbathing in mommy's lap.  The 2 hours was enough for us to decide she got to experience the beach for the week and could hand inside for the rest of the week. ;) Momma and Aunt Jen were tired! It also did not help that the sand burned my feet as I carried her & her suction machine back to the house...ouch!  . 

We spent the rest of the afternoon resting/playing in the house (I took a nap) until the guys got back from fishing and we all went out to dinner.

The next day everyone but Autumn and I went on a pirate adventure.  I think that was everyone's favorite.  It was a 2 hour adventure on the ship with entertainment, face painting, sword fighting, water gun fight, and loads of fun!  I was sad I missed it but was able to watch of videos from it.

After being pirates all of girls went shopping for a couple of hours. 

James, the 2 kids, and I went out to dinner and then on a dolphin sunset cruise that evening.

 The last full day James went golfing while the rest of us stayed at the beach house to play in the ocean & relax around the house for the day.  We could of had more days like that...it was lovely.  The Reed's went on their dolphin cruise that evening while James went bay fishing and I stayed home with the kids to start packing up to leave in the morning. :(  It was a great vacation & did not want it to end.

Madison & Gage doing photos on the beach

View of the beach line from near our beach house

Looking our from our livingroom in the beach house...BEAUTIFUL!

Catch-Up Time! (gonna be a LONG one)

I really am too busy to update my blog but I am forcing myself to sit down and get it done before I get even more behind on what's been going on in our lives.  Let's take you back to May...

Autumn received her wheelchair and it's given her lots of independence.  We've also learned she loves to go outside and wheels herself to the door and cries when she doesn't get to go. Her favorite thing to to open & BANG the drawers closed to her dresser and "No,No" means nothing to her.  We have had to put up a baby gate to block her from going into her room when she's in her wheelchair because that's the only thing she wants to do.

Gage had his 7th birthday since I last blogged.  We did a reptile theme party and had games upstairs and then hired a lady to bring animals to show & teach the kids about.  It was so much fun!

This is the type of snake I use to have ;)

 We thought it would be the perfect time to surprise Gage with his very own pet snake.  We decided a corn snake would be the best kind as his first.  He named him Corny and the pictures show his shock and happiness.  His hands were literally shaking & his eyes filled with tears.

I just love that boy so much! He also had his 7 year check-up. His new pediatrician wants us to see an endrocrinologist about his height. We've been down this road before but she wants us to check it all out again to put all of our minds at ease about it. We are also going to get a hand x-ray to see the bone growth and it will tell us if he's going to just have a late growth spurt, have stunted growth, or be in the middle that it could go either way. Gage is just now getting to where he wants to be the size of his peers so I think it will be good to look into again in case he does want to do something to help his growth. We are open minded to choices but I want him to understand God created him perfectly and to accept himself short or tall. If medically he needs growth hormones because of an issue with production and not just genetics then we do want to have that option available for him. We also took his doctor his Connor's test about ADHD. She did not give an official diagnosis that he is ADHD but all signs say he is. She first wants us to finish our business with an endocrinologist first before meeting with us to discuss options to help with the ADHD. She said if we choose the medication route it can cause loss of appetite and we do not want that to happen. Medication will be our last choice but we will have to figure out what will work best to help Gage be his best in school & help him to stay focused.

May is always a busy time with the end of the school year activities going on.  Both Gage and Madison had their field day on the same day so Dean (my nephew) & I went to watch that morning.

Gage with his friends

Madison decided she would rather work with the special needs kids instead of participating in the activities with her friends.  My heart was so happy when I walked into the building to take a bathroom break and saw Madison singing with this girl. Autumn's life has touched all of ours to be aware of the needs of others & I'm so thankful Madison has embraced that need.

Dean & Gage

 This year I had 2 graduations to attend.  Gage graduating from Kinder and Madison from 6th grade.  I was so proud of the both of them.  Gage earned many certificates, including the art award for his class.

This was a letter he wrote to his teacher for her end of year gift

This ice sculpture was for the 6th grade graduation

 Madison did awesome this year and it was no surprise all the special awards she received.  She got straight A's, perfect attendance, & 3 other special awards for best in her class in 3 subjects.  She's got natural smarts and is taking 3 AP classes next year in middle school.

So, it's official and I now have a 1st grader and 7th grader.

This summer has been busy as well.  It seems like I can never catch up...even "rest" days are filled with cleaning & projects.  So far this summer we have taken a couple of library trips, have done LOTS of therapy, Autumn had a EEG done to hopefully wean from her seizure meds (waiting on results), we've gone bowling, swimming (Autumn LOVED it), had a fun lake day, we've been to several movies, Gage is taking gymnastics and completed swimming lessons (went from wearing life jacket to diving off a board and swimming solo in just 8 days).  We got an AWESOME deal on furniture and a car so trying to redecorate and switch out furniture in rooms has been a pain but it was a blessing we could not let pass us by & worth it.  James had his birthday so I am married to a 36 year old...so old! ;)  I also managed to fit in a 24 hour trip to Odessa to go to my cousin's dad funeral. 

Autumn received her Dynavox communication device yesterday so next week we will get it set up for her to use.  So excited and thankful for it...it cost $18,755 but we got it free through a program called STAP.  These programs are so awesome because it allows for us to get devices that we would never be able to afford to buy but that Autumn can GREATLY benefit from. I can't wait to see how this helps in her development. 

We are leaving in 6 days for our vacation to South Padre Island.  I'm excited to be taking our first family trip since Autumn has been born and my brother's family is going with us so we will have a blast.  I can't wait!

Denial Reason

So, I decided to e-mail the adoption agency to ask why we were denied even though it's their policy not to share.  I'm hard-headed and wanted to figure it out.  :) James told me that they will not tell me and to let it be but I refused (submission is hard for me)!  I also asked if they had advice on what we could do next.  Well, the next day I get a very sweet e-mail back telling me the reason why.  It had nothing to do with us...they are only accepting applications for families who want sibling groups or older kids at this time.  They already have several families wanting kids with the same specifics as we are looking for right now so they are not accepting more at this time. I understand but my thinking is if there are kids still available then no one should be turned away until EVERY child has been adopted even though others may be in higher need at this time but guess that is how it works.  They gave me great information on where to look next...going straight to CPS or another agency.  Other agencies may be trying to find more adoptive parents with our specifics. She encouraged me not to give up and even said she talked to her supervisor about my e-mail and they are going to review their policy about not giving reasons on why an application is denied.  See, sometimes it does pay off to be persistant and hopefully they will change their policy so that parents will not get discouraged and want to give up on the process.  So, now we wait for a CPS meeting to attend or until we find an agency who is accepting applications for the type of child we are looking for.

Application Denial

So, we heard back from the adoption agency about our preliminary application and we have been denied for adoption.  They say it's their policy not to give the reason why.  Seriously?! I was heart-broken and offended.  The application just has your basic information, family info, and criminal history questions and then a short questionaire about reasons for adoption, expectations, & preparedness.  I am so confused on how they can deny us based on the application (we have all the basic qualifications required) and without having a face to face interview with us first.  I was even more upset that it's a Christian agency and they just say no and don't give you a reason and leave us to wonder.  It's very frustrating to know there are HUNDREDS of children available for adoption and families are being turned down just by initial paperwork and no follow-up.  I can understand if they met us, interviewed us and then decided no (would be more hurtful) but to not explore each and every family to be a potential family for children who need homes is crazy to me.  We are not even close to perfect people but on paper we look good...no criminal history, stable job & finances, James being a police officer and having a psychology degree, me being home 24/7 with the kids, etc.  It's beyond my understanding but it's God's plan & I have to have peace in that.  Now is the time to just pray about where God wants us to go next.  Do we apply with another agency, go straight through CPS and not use an agency, or just wait until God says go again? I had complete peace when we sent in the application and was so excited to get the process going but God has a different route & His perfect timing will come through. We've been praying about it nightly and our future child and so we know He's listening and His Will will be done...it's trust time!

I also want to share about Autumn's progress.  I'm actually nervous to type this out because everytime I comment on how well Autumn is doing something goes wrong and we take 2 steps back. ;)  BUT I believe God is answering our prayers on healing & maturing Autumn's brainstem.  This week I keep wanting to pinch myself because I honestly could never imagine this time would come.  I know God's powerful enough but never was sure if it would be in His will to give us that miracle we've hoped for.  Autumn's oxygen saturations have stayed between 97-100 ALL day.  This is NOT normal for Autumn...she goes into the 70's & 80's about 10 times daily (sometimes turning dusky).  She also has gagging episodes which makes her desat as well.  WELL, this week we have only a couple of gagging episodes and within 5 days she's desatted into the 80's only 2 times!!!  We have rarely had to suction her and she's been more alert and cooperating with her therapists and ALL over the house exploring.  I even took her out yesterday by myself and never had to pull over to suction her (even when she coughed).  Coughs usually turn into gagging fits and then turning dusky.  I don't want to get my hopes up that this is actually the miracle we've been praying for and then we step back again but I know this too is also in God's perfect timing.  So, I ask you keep on praying along with me that God's Will be done in Autumn's life as well and that this is the miracle we've been praying for.

This is how Autumn gets around...

BUT not for long because she is getting her wheelchair on May 13th!!!  She will still get to crawl around the house but I can not wait to see what she does when she's able to sit and move around and see the things that are up higher. ;)