Stress, Doctors, and Therapy, sigh…

I’ve been using this blog as a way to really update friends and family members on everything that has been going on with John. Since we all know he has a lot of medical issues that are being addressed. I have also started using this as a reminder of what has happened and a way to release some of the stress of being a mom to a special needs child.

Don’t get me wrong. I love John very much, but there are times that I just need to walk away for a few moments and have some “me time” to wind down. I feel like I was constantly on the go and just a caregiver not his mother before having my mother as his home health nurse. With her, now I am starting to feel more like his mom vs. just a caregiver.

It’s hard to see your child go through so many appointments, see so many different doctors, connected to so many cords, etc… Most days I feel like I am a first time mom all over again because I have no idea what “John’s normal” is. So when he starts vomiting a feed I have to mentally run through a check list of what I have to do and why he would of vomited. Same with when any of his alarms go off. I have to check to see why and what alarm is going off.

It can be physically and emotionally draining with having an appointment almost every week (or several in 1 week). As well as dealing with all of his needs day in and day out. So there may be days that if you see me that I will look exhausted and probably haven’t slept much.

Thankfully I have a very supportive husband who helps as much as he can when he is able too. He helps numerous ways around the house and with our boys. He is my rock and listens when I need to discuss anything.

UPDATE FOR JULY 31ST:

ECI (Early Childhood Intervention) came out today to assess John. He will be needing Occupational Therapy 1-2 times a month, Physical Therapy since his physical structure is the age of a 2 month old, a Nutritionist, and Speech Therapy.

-Jacqueline

Praise the Lord!

Praise the Lord!

John’s sleep study has finally been scheduled! We have also managed to get it scheduled a lot sooner than Texas Children’s was giving us originally. When I called on Monday to see if they had started scheduling I was told I had two options.

1) I could go to the main campus and wait till October/November (like we had originally been told).

OR

2) I could go to the west campus and have it scheduled for August/September.

We went for the west campus. On August 26th at 6pm we have to report to Texas Children’s West Campus in Houston. I am extremely excited that we have managed to get this scheduled. It feels like a huge weight of uncertainty has been lifted off my shoulders.

Nurse & Patient
Nurse & Patient

My mom has officially moved down as of Sunday to take the position at Angels of Care to take care of John. It is nice having her down so she can help with him. Another plus is she gets to spend some time with her other grandsons.

Now the search is on to find a bigger place since we needed one before she moved here. So please pray that we may find one in our price range as well as a sub-leaser for our place at the same time.

-Jacqueline

Family

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2011

It has been a little over 3 yrs since I last saw my brother and his kids. Joseph was just a few months old and my mom only had 7 grandkids at the time. I did see him again around May of 2011 because our sister Rebecca was getting married, but since then I had not seen him except through FaceTime or pictures.

SONY DSC
2011
SONY DSC
2011

He and his 3 kids made a trip to see my mom and his sisters just this past Friday. Originally Bobby told me that he was going to come into town late Saturday night/early Sunday morning. Unfortunately I was not going to be able to make it to see him. I was bummed. With Thomas having to run sound at church, John’s GI appointment on Monday morning, and Joseph and Alexander’s swimming lessons I was not going to be able to really see him for any length of time. Well, Bobby made a surprise visit on Friday night. I saw his pictures of being in Denison that night before going to bed. I was mad that he hadn’t told me he was going to be coming into town earlier. If he had done so I would of made every effort to of been there Friday night or Saturday morning.

I was talking to Thomas the next morning about it. That is when Thomas made me happy by telling me that if I could get the kids and everything ready in the next 30 mins or so (by 9am). Of course if you tell a woman she gets something she wants if she does whatever she needs to do, 99% of the time she is going to have it done in record time to get what she wants.

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I had a great time seeing my brother and his kids. I would of loved for more time, but I am willing to take whatever I get since he lives in Indiana. I managed to get a new updated photo of all 10 grandkids (maybe next time there will be 11) for my mom. Also a more updated sibling photo.

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Siblings (Oldest to youngest-Robert, Jacqueline, Rebecca, Rachel)

 

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All 10 grandkids (Oldest to youngest- Michael, David, Aiden, Alexander, Rihanna, Jordyn, Joseph, McKenna, Yazmine, John)

 

Reset?

It has been a rough week around the Miller household. If I was able to press a reset button, I may have done so.

John had an appointment with the Cardiologist last Thursday. He weighed 10lbs 10oz. The appointment was just a follow up from the echo that was performed in the hospital. We’ll have a follow up appointment in on January 8th.

John has back pedaled a little in eating. We have been having to use the g-button a little more. This could be due to him not feeling well too. Dr. Meyer, his pediatrician,  believes he has an upper respiratory infection. He”s been on antibiotics since Tuesday. He also weighed 10lbs 8oz at the doctor that day. The weight loss could have been a result from John vomiting his feeds. He has a nasty wet sounding cough that tends to cause his milk to come up sometimes from coughing so hard and so much.

 

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Joseph and Alexander started swimming lessons this week. They’re both learning so much and seem to be really enjoying it. I am in Joseph’s class since it is a “Frog and Parent” class (that’s the name). Joseph is catching on really fast and learning, but he’s also scared to get his head wet. I believe it has to do with his ears since he recently busted his eardrum last Thursday. Alexander is in the “Minnow” class. He also seems to be catching on really fast and learning.

 

Swimming Lessons Pic

One blessing that God has sent our way is my mother. She is an RN, and will be coming to live with us on the 28th to help take care of John as our home health nurse.  I am also the boys will enjoy having her around too.

That’s it for this week.

-Jacqueline-

jacqueline@millershewrote.com

Phil 4:13 I can do all things through Christ who gives me strength.

4th of July

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I hope everyone had a great 4th of July.
John slept through fireworks unfortunately.

Hopefully next year he will be awake and enjoy it. Thomas, Alexander, and Joseph watched the fireworks at the George Bush library from the front of the apartment. We normally go.

John has been battling a little cold or something so we have been giving him breathing treatments and antibiotics. He weighed 10lbs 20z as of July 3rd at the doctor.

Next week we see the cardiologist for a follow up from his heart echo that was performed in the hospital back in May.

Alexander and Joseph start swimming lessons on the 15th. Both boys are really excited to learn how to swim.

That’s it for this week.

-Jacqueline
jacqueline@millershewrote.com