Thankfully, today was a much better appointment day!
Sidenote: I cannot believe that tomorrow R will be 33 weeks old! Wow! Where has time gone?!
Back to clinic visit:
R is in the 50th percentile for height and weight. However, his growth curve is still declining. He has never actually lost weight so that is super awesome. We will be going to speech therapy in the next few weeks for an evaluation to confirm no spoon confusion, no texture issues, and no other eating confusion. (We are really certain that R has no speech issues, we believe he just isn't a big eater. Hopefully, speech will confirm our expectations.)
Roanan is crawling now and they were so impressed. Developmentally he is off the charts! He is doing perfectly and they agreed with confirming that R could benefit from a speech evaluation.
They said R was sounding great and to keep up with treatments as we are now. Vest 9am,12pm,3pm,6-7pm. Nebulizer 9am&7pm albuterol & saline 7%, 3 pulmozyme. Also, our nebulizer cups expired this month and they are working on getting us new ones. At this time we don't have a home health provider so we are working on finding a company who fits our needs.
She is wonderful and helps us so much. Whether she lends an ear for understanding, or takes care of scheduling, or voices your complaints and concerns; she has never failed us yet. She believes R is doing great and as parents we are being as proactive as possible. She is also working on speeding up our speech appt. (It could be over 8 weeks before we get in) She made our next appt. for the end of October. This coming week our clinic will be going to the big CF conference, have fun ETCH CF clinicers!
Today we spoke with a wonderful pediatric pulmonologist (they have 3 different docs and today was our first time meeting this one). He believed that R was doing great! His lungs sounded clear, minimal crackles. The doc wants us to stay on all the meds we are on now and keep up the treatment regimen. He spoke about different infections, antibiotics, and bronchoscopies. He filled us full of useful information about CF treatments. Dr. R isn't very concerned about weight gain at this point he believes that, for now, we should encourage food through not the day and not fret when/if R rejects.
The RN informed us on our next appt. date and took another culture via R throat/gag reflex. During the quick swab R was actually asleep, poor guy! We were also given poop tubes for a few tests for the GI department. FUN.
Overall, R is doing great. Praise the lord. He is not only getting by, he is thriving. He is talking 24/7, clapping his hands, crawling, fake laughing and enjoying balls. He is hilarious and laughs all the time. R still loves his jumpy, his fur-sisters, and being outside. Lately he has became quite the artist. He enjoys painting and doing crafts, and I must say he is very talented. R loves to be read to and learn animal noises. He is truly a joy and my greatest gift. I am amazed by him everyday.
Since Thursday he has been coughy and slightly snotty. But the clinic wasn't really concerned. Hopefully, it will just fade away. We are praying that his culture from this visit will be clear and reflect no growth.
Practice breathing exercises
Clear up snottiness
Do not catch the flu, cold, virus, or etc.
I am beyond blessed and love my life. My child is my sun and I circle him. I praise God everyday for my child. This life of ours can be a whirlwind but it sure is beautiful to watch the dust fly then settle....