Saturday, May 27, 2017

May 26-27

May 26.

I felt a lot better today, thankfully! Thank you to everyone who texted and sent their love!

Also a huge thankful to Mrs. Angie and the Lehans for watching Big Bentley for us. He sent us lots of videos and thought he was on vacation. We can't wait to see him and R asks about him almost every day!

R did great with treatments and is really improving on doing hypersal through the aerobika. I am so proud of him, that is not an easy task and most kids are 6+ before they can do it successfully. The staff is always impressed by his hard work and compliancy. I work really hard at home to make treatments a priority and a serious time. In order for treatments to work like they should they need to be taken seriously vs a game.

R's weight is staying in the same window which is totally fine. Between 12.2K and 12.8K. I am really missing my blender and I can tell commercial real food blend we are using isn't as easy on his digestive system as our home blends are but it is way better than formula.

He is having some issues pooing so I have been adding prunes and crossing my fingers. I'm anti miralax so I will find an alternate solution...

We are doing great and r keeps looking forward to going home, riding the four wheeler, and he keeps saying he wants to go to walmart?! LOL

May 27.

Today was a easy and lazy day.

 We got a new pulmonogist since one of our current ones is retiring soon. Let me just say, change is very hard. Trusting some random person to care for your kid whom you don't know has its challenges. My advice would be stand you ground and be your childs advocate.  Yes,  they went to medical school but you know your child and they are your only patient. So many times throughout our journey we would have became just a number if I wouldn't have been studied up on cf and advocated for my son.  I believe that knowledge is key,  the more you know the more proactive you can be and the better health your child will have...

Weight today was 12.7k

Still no poo.... may try a hot bath tomorrow.

R has a weird above the skin rash surrounding his face ay his hair line and on his back. I have mentioned it daily for the last 5 days with no avail. Our fav. Doc is here on Monday I will mention it to her with hope of some treatment plan and diagnosis.

R has started acting out which tells me he is feeling better and is tired of this room. It's so hard to discipline him here. Here he is the sick kid who does blood draws and constant vitals. Here he gets filled with medication through a line which travels to his heart. Here he is scared and angry which I fully let him be. He is allowed to he angry and scared. He is allowed to be mad that he has to do treamtents. I support him having emotions and voicing his feelings but no matter how bad you feel physically you are always in charge on how you act. Here I don't let be ugly or disrespectful. Here I still punish him and teach him how to be a polite patient and good tiny human. Here I still encourage him to learn and have fun. Just because we are in a hospital room that isn't an excuse to just fade away from life. Christ entrusted me to raise this little human in a way to make him proud and no matter where we are or how sick he is I always will.

I love my child more than comprehensible and being here is draining. I won't lie. Being here hurts physically and emotionally.  But being here with him by his side in this hospital room is still a dream for me. He is brave. He is kind. He says thank you and please to the people who stick him with needles. He smiles when they awaken us at 3am for a blood pressure. He hugs me and says he loves me when I am failing at being his mom. He is a gift from God and I cherish him daily. I cuddle him every second I can, I take every hug and kiss that he is willing to give. I take selfie after selfie to cherish every memory I can with him. He is loved more than any other little boy because he is his mommas hero and dream come true....

#Fight65


1 comment:

  1. If you don't stop teaching him to call me MRS. Angie I'm going to whoop you! I'm happy to do such a little part to help! I can't wait to see my little buddy when we both get home!

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