Welcome to my life!: With a bang it started and it ended with worry and stress

The beginning of May started out fast and furious for our house. With Dylan recovering from a little cold, Rhett’s blood pressure, Gavin’s allergies, and braces for me. On Tuesday the 3^rd of May I took Dylan and Gavin to the allergist and had them tested for different allergies since Gavin has been miserable and Dylan has the same thing that Rhett has. Gavin has the more extensive test since he has been feeling so yucky for a while. He would ask me for weeks before his appointment if it was his appointment so the day of he was so excited. That is sad when my mostly physically healthy child is excited to see the doctor. The boys had a scratch test done on their backs. I only go the beginning picture but you can tell that Gavin’s back looks so much worse than Dylan.

After their appointment I raced Gavin back to school to take tests and then took Dylan to school. That was a crazy sprint since I was at the orthodontist office right after I dropped Dylan off at school.

I went from this:

To this:

After I meet my husband for lunch. He never saw me in high school with braces so he couldn’t stop staring. HAHA! He said I look good in them. I know that I am amazing! (At least that is what I tell myself.) He took me to this little place that is only open for breakfast and lunch. I was able to get an omelet and actually eat, that was the first time in a really long time I felt sick because of too much food. Classic mistake when you have gone without food for a long time. :)

Rhett and Nikole had an orthodontist appointment the same day too. I went to grab Nikole, but she was testing and the school wouldn’t let her go. WHAT!!! Are you serious?!?! UGH! Went and grabbed Rhett from school and took him up to the hospital (that is where their orthodontist is located) checked him in and let them know I had to go get Nikole and I would be back. Left there and went back from Nikole, got her took her up there and waited….. waited……. and waited. But I totally understand and it is ok. We were really late because of her school and they gratefully didn’t turn us away. When they had a moment to work us in they did. We didn’t leave there until 5 pm or around there. Granted their appointment time was 2:20 pm to begin with, so almost 3 hours later we were out of there. Nikole said she hurt but she wasn’t going to complain since I had gotten braces just that day. Thank you child. HAHA!

I contacted the doctor this week since Rhett was itching everywhere. It is not normal to itch between your fingers or have what looks like a rash thing. So I ended up setting up an appointment for him, but while I had the doctor on the phone I told him that Dylan’s headaches were getting worse. It is a bad thing when an 8 year old will take medicine up to a 10 year old and ask him to open it because he has a headache. That really scared me when I found out that he had done that. The doctor was hesitant and wanted to wait till the medicine would not help the headaches at all. I told him they were getting worse and my gut is telling me that something is wrong. She he sent an order in for Dylan to get an MRI. I got a call the next day to set up a time for his MRI. Then the wait was on.

Mother’s day came and Dylan was the cutest little boy ever!! He would keep asking me to guess what he was going to give me. He would even give me clues. “Mom, I am going to give your present sun and water. Now what is it your present?” I said a puppy, a mailman, and a horse. Well he was in fits and giggles and told me no. Then he had the nerve to say, “I am not going to tell you.” :o I cannot believe him! I knew what it was but it was too funny to not randomly guess things. When mother’s day came he was so excited he could finally give me the present that he gave sun and water to, and then on top of that he pulled out a wrapped gift. I opened it and he animatedly told me that he made it at school with BT. He told me how he created it and everything, then gave me a hug. He continued to give me hugs that day. He would say, “You know why I hug you lots? Because it is mother’s day and I love you.” Awwwwww!!! What a cutie!!

The day after mother’s day Rhett had his appointment with the primary care doctor. We talked about what has been happening and that he is itching all over. I had previously even sent pictures in to the doctor before his appointment. We talked about that nothing had changed except for the fact that he is consistently taking his heart medicine and that weekend he started taking it he started itching. The doctor and I looked at each other and started laughing. He thinks Rhett might be allergic to one of his heart meds since he says the rash looking thing that Rhett was sporting that day looked like hives. Rhett also had some major yucky stuff come out his ears and was given drops to help clear up an infection in his ears. While there I told the doctor that Dylan’s MRI was scheduled for the next day at 8 pm. He said he would look for the results. I also gave him a paper for him to fill out in order for Rhett to apply for a driver’s license. He said he would have to write a letter on top of filling out the paper.

Blue or green?

Blue for sure!

May 9^th Dylan had his MRI at 8 pm. He was the last one scheduled and they were happy to see us. We had him shower and ready for bed that way on our way home if he fell asleep he could just go to bed as soon as we got home. They had planned on him just holding really still and watching a movie while they did the MRI. He was so funny getting all hooked up and ready. He even gave us a thumbs up. My heart was pounding since I knew something was causing his headaches.

After he was done she (the technician) came out with him and said he did great. She had gotten everything they needed and the radiologist would send the result over to the doctor that ordered the MRI. After I was home for a little while I decided I would look online and see what the results were myself. I know I am not a doctor but I do know some medical terminology and can google lots of different things. But because I knew something was wrong with my baby I didn’t want to wait.

I saw “Moderate hydrocephalus” as the results. My heart hurt. I knew what was going to happen, and I expected it, but I really didn’t want that. I cried. I kept reading over the results again and again. I was looking up words that I didn’t know to fully understand. This was at 10 pm so of course I couldn’t call the doctor and ask him to explain what every word meant. So I took some deep breaths and let my husband know what I had just found out and showed him the results. I told him I would be calling the doctor in the morning.

After gathering my wits and taking to my husband we decided that we will take it one day at a time. The next morning I called the doctor before he even arrived at the clinic. (I know I am anxious.) I talked to a nurse and let her know what the results were, she said that she would have the doctor call me when he gets in to the office. He called me about 2 hours later and said, "Well it looks like Dylan has hydrocephalus. Guess it isn't much of a surprise? I think you ought to take him in to a neurosurgeon." So I called the neurosurgeon's office and tried to set up an appointment. The receptionist was completely rude to me. He (the receptionist) told me I needed a doctor's referral, but in a manner that was very unprofessional. I was so frustrated. I contacted the primary care doctor and let them know that the neurosurgeon's office needed a referral for Dylan in order for him to seen. They sent it that morning, so I called that afternoon to set up the appointment. He rudely told me that they do not have a referral for Dylan and that it would be maybe Monday they would get back to me. WHAT?!? I was so upset. Contacted the doctor's office again and asked nicely for the referral to be sent again. The nurse I talked top was shocked since she sent it at 10 am, but said she would send it again. She did and I called the neurosurgeon's office only 15 minutes after to make sure that received the referral. They told me they didn't have the referral. I told them that the pediatrician's office just sent it over 10 minutes ago. He was like, oh let me go check the fax machine. Gah!! So frustrating! He found it. I think he found both of the referrals, but he wouldn't tell me that since that would make me right. Then the wait began. Sigh.

I was able to go to Cashflow that day but my mind was in so many places it was really hard to focus. My sister asked me to give her a ride home that night since I was going to be in the area. I got lost trying to find her. Granted it was dark and I had no address. But I did find her after a while, which was good. She was really stressed and so was I so we stopped and I got us frosty and fries. She wasn't sure why I had gotten fries but one she tried it she decided that it was yummy too. :-)

That Friday as I was helping kids get out the door I hear this sound coming from my hallway. I look down the hall from the kitchen where I am putting things away from the morning hustle and I see this cute little boy playing with the door stop. I have not heard that noise in such a long time it took me back to when I had very young children that were toddler age at home. Who says kids get too old to play with the door stops?

It was also my husband's birthday and the kids had a lot of fun singing him happy birthday and having cake and ice cream. I also got a call from the neurosurgeon's office to set up an appointment with a doctor I refused to have for my son. Sadly it was after hours so I had to wait until Monday to make sure they set up the appointment with the correct doctor.

I specifically ask to see the same doctor that did Rhett's shunt 2 years ago for a reason. The neurosurgeon that did Gavin's surgery when he was 3 months old was abrupt and I really didn't like his bedside manner. I am not saying he is a bad doctor, he isn't. I just do not have the patience that I used to have. The only reason they were going to schedule Dylan with that doctor was because he specializes in Chiari 1 malformation which both Dylan and Rhett have.

Monday morning I took Dylan up to get some teeth extracted. He was really excited about this since daddy will give you $5 for every tooth you lose. He was so brave and sat there holding my hand through the whole process. Every now and again he would say it hurt, but other than that he held really still and watched Scooby-doo. The dentist pulled 3/4 teeth that was ordered by the orthodontist/craniofacial doctor. As the dentist was getting ready to pull the last tooth, she decided to take another x-ray to make sure the little tooth fragment wasn't part of his permanent front tooth. The x-ray said it was in deed part of the front tooth. We decided to not pull it out. But since Dylan was really numb I decided I would have him go to school. He had also told me that his head was hurting. Not surprised seeing as they pulled teeth out of his face. We went and saw daddy he took Dylan into the bank and have him $15 for all the teeth that was pulled. Dylan was so excited. We had lunch then got Nikole from school. That afternoon I got the papers from the doctor in order to apply for a driver’s license.

The same afternoon I called and told the receptionist that I refuse to see the neurosurgeon that they had set up for Dylan's appointment that week. I let him know nicely I wanted an appointment with the other doctor. I think that they were shocked that I refuse to see that doctor. He said that the soonest Dylan could be seen would be the 21st of June since he is a new patient. I said that is ok and set it up. The wait continues....

Wednesday Dylan saw the eye doctor for his normal follow up. We were running late since the schools are making me crazy as I try to get kids for doctor's appointments. So while I am racing to primary children's hospital for Dylan's appointment I called and let them know we were running late but headed to the hospital. She asked when we would get there and I told her I thought 10-15 minutes. She said they might have me reschedule if I was too late. I told her that Dylan was just diagnosed with hydrocephalus a week ago and we really needed to make sure his eyes were ok. She called over to the clinic and let them know that we were running late. They said they would still see him that day but we might have to wait. I was ok with that. It was reliving to have some pressure taken from me. We got there safely and was seen. The eye doctor said there is pressure on his optic nerves and said we need to get in to the neurosurgeon sooner than later. He sent a letter and message to the neurosurgeon's office letting him know of the findings. He then told me he wants to see Dylan in three months after the pressure is taken care of. It took us a few hours to head home. After getting home I get a text from the drama teacher letting me know she was sick and asked if Dylan would like to go to see Peter and the Starcatcher. Of course he wanted to go with mommy and Rhett, so off we went to see the play. It was really good and the kids enjoyed it lots.

I got a call the next day from the neurosurgeon's office saying that Dr Kestle would see Dylan on the 31st of May. I was grateful it was going to be after the last week of May since that week was the last week of school for Rhett, Nikole and Dylan. To top it off my husband was out of the country working that week. My children were lucky on Thursday and they ended up getting a pet! I know I know am I out of my mind? Probably. But this little girl has brought a lot of smiles and giggles. Thankfully she has not triggered any allergies in anyone of my kids. Looks like they found a pet they can play with and is not allergic to.

The very night that we got the bunny the power went out for hours, but the sky was all lit up. We drove to make sure people were not hurt. We saw lot of people on the road that night and was able to figure out what was causing the black out.

From a distance

Right on the side of the road in front of the refinery.

Since I had totally forgotten you need other documentation for a license, Friday I spent a few hours at the social security office applying for social security cards for Gavin and Rhett with Nikole. After they called our number we find out that we need something from the doctor or the school proving that Rhett is Rhett and Gavin is Gavin. I sighed and left. Looked at the clock (3:30 pm) and raced to the doctor's office. Filled out the papers to get the information needed for the social securely office. Looked at the clock top see if I could make it back before the office closed (4:02 pm). Nope. The social security office closed at 4:00 pm. Oh well I guess Monday morning I will be back.

The lady that helped us at the driver's license division said that after we get more doctor info and the social security card come directly to her and she will help us. She said she would remember us since we had a special doctors letter and she had to have her supervisor look it over and make sure he would be allowed a driver's license. They would allow it with more documentation.

Sunday Crystal and I were at a “festival” for our non-profit trying to connect with other parents with special needs children that need support. We had a good time meeting other people. There are still 2 more Sundays that we are going to be at the “festival” this summer. I hope more and more people come out so we can connect and network with others.

Monday I took Nikole to school, got all the kids out the door and then took my husband to the airport. He flew to Canada for work and would not return until Saturday. As soon as I dropped him off I headed right back to the social security office to apply for the cards. I saw my mom’s boss there since he retired at the end of this last school year. That was funny for sure. I was glad to get that done since Rhett really wanted to take driver’s Ed over the summer. Sadly the Social security office told me that it would take two weeks to get his card. He needs his card in order to take the test at the driver’s license division to obtain his learners permit.

Wednesday after taking Nikole to school and getting Dylan on the bus I let Rhett know that I told the people at Gavin’s school that I would be there to help with field day. It was an all-day event. Raining and overcast and the kids were still playing in the water having a great time. Go figure…. This was also the last day that Rhett went to school, he got his year book that night at the yearbook stomp. That was a crazy night. Dylan had scouts (going on a mile walk), Rhett had yearbook stomp, Gavin had scouts (doing something totally different), and Nikole had young women’s. It was all happening at the same time too. I asked the respite worker that the boys have if she would either walk with Dylan or go to the yearbook stomp with Rhett. She went with Dylan I went with Rhett and Nikole and Gavin were on their own.

At Gavin's field day.

Yearbook stomp

Wheelchair your way through this mess.

Thursday was field day for Dylan. I also had the privilege of watching my niece again. She came to the park with me and Rhett and he was a great babysitter with my supervision. The kids and the teachers alike all said she was really cute. Yep she didn’t get a nap until we were in the car after helping with field day for Dylan. Thankfully his was only until noon and after that, Rhett and I took the baby car shopping. We had a lot of fun just running around trying to figure what car has a really big trunk in order to hold the wheelchair.

So tired and yet still awake. Everyone adored her at the park. :)

Peek-a-boo is so much fun!

Friday was the last day of school for Nikole, Rhett and Dylan. Gavin did not have school that day since it was a makeup day if there was a snow day (which never happens here). Gavin stayed home with Rhett while I took Nikole to school. I also had Dylan with me since he had a performance at school that morning that he really wanted me to see. As I took Nikole to school I informed her that if she had done really well in school I would not force her to go to school every day and she could have the last few days off like Rhett. But since she decided that she didn’t want to do any school work and was failing many classes (the last time I looked she had 1 A, 2 D’s, and 5 F’s) she had to attend every single day no matter what. She was totally bummed, but hope she learned her lesson. After dropping her off at school Dylan and I grabbed breakfast and went to his school. As he was with his class getting ready to perform I hauled all the oxygen out to my suburban. Because I had a lawnmower in the back I couldn’t put them there I had to place them on the back seat. After I got all the oxygen from the deaf school I was able to talk with the nurses and let them know what was going on with Dylan. I also had a chance to talk to the director and ask her about and aide and interpreter for Rhett for summer driver’s Ed. She said that they do not provide them for things in the summer. So it looks like Rhett will get driver’s Ed in the fall. L Oh well there is nothing that I can do about that since I or daddy would have to be with him in order for him to take it during the summer and that isn’t likely since there are appointments like crazy. After I talked with them it was time for the awards ceremony that they have every year and this is the first I was able to attend. J Dylan sat next to me. He is such a cutie!!

His award is for the iPad genius. Go figure he doesn’t even own one.

After that I was able to take him with me and we headed over to Skyline to get all the oxygen. We hauled all the tanks. I even had help!

He dragged it down two whole halls to the door just like this. He was so cute to watch. J

After loading up all the tanks (grand total of 86) we headed to get Nikole from school.

She was waiting and said she got out at 11 am. Oh well little lady, next time do all your work and you will not have to sit around waiting for everyone else to get done doing everything else. I grabbed them lunch then we went to grandma’s house to mow the grass. J

Forgot there was the flash on.

Took the flash off.

While I was helping at grandma's house she was telling me about her rose bushes that had spots on them. I decided I would take a picture and look it up online to help her know what to do.

After mowing the grass headed home to drop off the full tanks and get more empty tanks and then out to IHC to return tanks.

As I was pulling into the parking lot of IHC I called and asked them if they wanted the oxygen tanks that I had, they said yes and I let them know that I was by the wheelchair doors. When the man came out with a cart that could hold 24 tanks I let him know he was going to need a bigger cart. He looked at me and said, “Am I really going to need a bigger cart?” At which point I said yes you are going to need a bigger cart. Let’s just say he didn’t believe me until I opened the door and he looked in the car and said, “I am going to need a bigger cart.”

There was oxygen piled to the top of that back bench the floor and the side.

He called for reinforcements to help haul all the oxygen in the building. They said, “Oh that is where all the oxygen has been.” Yeah my son has the most oxygen tanks in the valley during school. Since the 86 tanks I returned didn’t include the tanks at my house either.

Memorial Day weekend came in a flash and my anxiety hit the ceiling since I knew Tuesday Dylan would be seen in the neurosurgeon’s office. We really didn’t do a lot over the weekend since daddy flew unto town from Canada. However we did go to the park and play with cousins.

Tuesday came and I was happy to see that the hospital had requested an interpreter for Dylan so I could be mom and would not have to explain things to him and try to figure out what he is saying for a moment. After looking at the MRI he had done earlier that month and the one he had done in 2008 he said he needed to talk with the eye doctor and the radiologist before we do anything else. He said he would call me the next week with plans.