Joseph saw the team at Dr. Fierro's Friday. It was a 4 hour appointment that was well worth the time we spent there.
The first huge blessing was that Cathy Clark, who is the only speech therapist the pulmonologist wants us to use at swallow studies, was the speech therapist we saw. She immediately listened to Joseph eat and said that she did not like the way he sounds while eating a bottle & said he is still aspirating. He loses his seal which causes the clicking sound, gets tons of air & only gets half a suck/the amount of fluid he should. She wanted us to thicken his liquids and use a bigger flow nipple. I told her that after the last swallow study he was to thicken liquids with the size 1 nipple & that after 45 minutes of trying that, I just did regular formula with a size 1 nipple for sanity. She said I bet you did. She was not impressed with the previous swallow study & she is excited to do his swallow study on the 28th so she can see why his mouth is doing everything it is. She was very thorough and the most helpful person. The speech therapist that we see twice a week is awesome & excited about all the ideas and suggestions Cathy had for Joseph.
The physical therapist was impressed with all we have been doing with Joseph. She completely agreed with everything Stephanie (Joseph PT here at the house) was already doing. We asked about some areas along his spine & she agreed that they were muscular from the way he wants to sit and hold himself. She wants us to get his feet x-rayed to make sure nothing bone wise is going on & then look into if we should get braces so his feet don't get in the habit of holding themselves out since he is not weight bearing. She said his toes are no big deal and will straighten as he begins to weight bear on them. She said he will just keep improving the more we work with him & to keep pushing him to progress with weight bearing on his hands and feet.
Dr. Fierro was excellent! He was very helpful & explained everything on a level we understood. He was telling us that Joseph was strong. He wants to move & moves with a purpose. He said he has low tone & said the diagnosis is a fancy way of saying he has low tone & not sure why. He said no matter the "why" we still do the same thing & keep moving forward with all his therapy. He said since he has a normal mri, he wanted to rule out a few other possibilities. He really does not see Joseph to have muscular dystrophy or a degenerative issue but drew his blood to test his levels in order to put it to rest and not be worried he will hit a certain point and then start going backwards. He also had blood work done for genetic testing. He doesn't suspect it will show anything but again wants to rule it out. He said most children don't ever know the why as to why low tone. He said Joseph has trouble with his body awareness and where he is in space. An example of him is this ( think of picking up a pen) - our brain tells our hand to reach out grab the pen & pick it up - Josephs brain will have to tell him reach out, don't push your shoulder too far forward, grab the pen & bring it up. Low tone will result in maybe pressing too hard while writing in the future or too soft. He said his low tone is not too severe. He said he couldn't promise anything as far as walking independently, etc. He said kids with low tone are good gymnasts because of the flexibility & can throw hard because they can take their arm back farther than most people.
Joseph's low tone explains everything - constipation, lack of ability to hold his head, progressing forward at a slow rate, eating difficulties, etc...
We will know about the ckp test by Tuesday. He has to call us with abnormal results and will not call if everything is normal. Hopefully, we will not hear from him! The genetic testing takes 6 weeks to receive back from the lab.
We are extremely thankful to have Joseph been accepted to see Dr. Fierro. His practice can take over a year to get an appointment & we were accepted and seen in 8 weeks.
A nice summary of the appointment is he has low muscle tone. We don't know why and while we attempt to figure out why, just keep on plugging along. Even if we don't find out why its not a problem because the treatment is the same.
Bottom line - God created Joseph Cash & we are blessed to be chosen as his parents. Seriously, it all boils down to why do I have asthma, why does someone have this or that, etc ..... God made us the way we are & we are absolutely fine with the simple fact God is God and we are not! Honestly, at this point, after all these appointments, tests, etc the best we can pray for is everything to come back normal.
This is the sweet nurse that checked Joseph in & took notes while we explained everything that has been going on so far :)
On to the next item - Jordan! Oh our sweet spunky Jordan. She is doing well in school and obeys! Praise God! She is still working with Dr. Homeyer & play therapy. She seems to be progressing well with the therapy. Dr. Homeyer sees her once a week & is helping Jordan work through some issues she has with authority, stubbornness, and lack of attention she gets due to Joseph. Joey & I are learning ways to word things, words to say, and many other helpful tips.
Joey is loving his job & a great husband & father. As you can imagine, he picks up anything I am not able to get accomplished and does it with a happy heart. He is absolutely amazing & I am honored to be his wife.
Oh & then there's me! I feel as though I owe my friends an apology for not calling, texting, etc as much as I would like to or have been able to in the past. I really do miss everyone! To say this is easy is a lie! I knew my world would be rocked on January 3rd, I just didn't know how hard it would be rocked! I am humbled by all the blessings God has given us & provided during these past 9 months. As you can imagine, all of this is not cheap, it's time consuming, it's tiring, and at the end of almost every day I feel as though I have been run over by a train or beaten-emotionally & physically. I pray non-stop for my family. I constantly remind myself having children is a blessing & a heritage from the Lord. Many lessons have been learned & will be learned as our journey continues - patience, appreciate the small things in life, take it day by day, minute by minute, God's grace is sufficient for the moment, don't worry about tomorrow for today has enough troubles of it's own. I literally wake up & look at that day in my calendar & that's it! Nothing more - I can not process it all. I will freak out trying to take in everything at once. Most days, I take it hour by hour - who is here now & what needs to be done at this moment. It is truly the best advice ever!
The question I am asked the most is "how can we help?" That's simple! Pray - every time we cross your mind, pray! There is power in prayer! God hears them. He hears each of us & knows exactly what we are going through! He created all this for His glory! What to pray for specifically? - peace, finances, wisdom, the medical professionals, family unity, healing, & patience. There is another thing you can do - come over! Yes life is crazy, yes we have therapists here all the time, yet we crave people! This can be very isolating so please call, text, email whatever & plan a time to come over. We love seeing everyone! Jordan asks everyday - "mom can friends come play". Keep us informed about yall - we want to know how we can be praying for you & what's going on in everyone's life. We want to rejoice with all the amazing things going on & be there for you if you are experiencing a hard time.
We snuck in a hair cut last week as well :)
