Thursday, September 29, 2011

God is in Control

It is days like today that overwhelm me. I was at CHOP for Leo's eye appointment and a follow up with ENT. Both appointments have resulted in scheduled surgeries. As soon as I can get it scheduled, Leo will be having surgery to have his eye muscles tightened and while he is still anesthetized the ENT doc will perform a bronchoscopy. The bronchoscopy is to see what is going on with his airway and why he had trouble breathing after his last surgery. The irony here is that in order to do the bronchoscopy and eye surgery he will have to be put under. The upside is that if he does have any breathing difficulties after surgery, ENT will already be on the case. Both procedures are considered same day surgery, but it was suggested to me to pack an overnight bag “just in case”. We also have to monitor, Leo for sleep apnea as he has been snoring at night since his palate was repaired and according to the in-office exam done today he has really big tonsils and adenoids (of course he does) Maybe a sleep study in our future? I was hoping to come to some sort of conclusion about Leo's hearing today (one of the goals of this appointment), but he had fluid in his right ear (of course he did) and besides he can't sit and do the regular hearing test with beeps. So we willalso be scheduling him for an ABR (The auditory brainstem response). He will have to be sedated for this test.


Before I end my Leo update, I will backtrack to Monday, when we were also at CHOP. Leo had an upper GI, which showed everything was normal. YEAH! We also met with the general surgeon about g-tube surgery. He recommended that, since Leo has reflux, we see his partner in the GERD (Gastroesophageal Reflux Disease ) clinic before scheduling that surgery. So that deal is “on hold” at least till after the middle of October.


After our doctor's visits today, Leo and I went food shopping. We then hurried home for our 2 month post placement visit with our social worker. One of the questions she asked was “how are you doing?” That was a loaded question as today I was feeling overwhelmed. Who wouldn't after being to 2 doctor's appointments with both ending in needing surgery. We told her we have good days and bad days. Days when I just want to run away and hide. But there are other days when life is good. Fortunately the good days do out number the bad days.


As the month of October begins, please pray for our family. Please pray for Jeremy and myself. Please pray for our marriage and children. As of right now in October, Jonathan will be beginning casting for a new prosthetic leg waist (this will be at least 2-4 trips to Shriner's Hospital) and he also has a follow-up to a surgery he had a few months ago. Leo will be seeing a cardiologist, a GERD doctor and possibly having ear and exploratory surgery. Amanda, Tyler, and Jordan have a routine eye doctor appointment and I have an annual medical appointment scheduled. We also have just regular life of homeschooling, orchestra, soccer games, music lessons, and play dates … You get the picture. Life is full.


Thankfully God is in control.

Wednesday, September 21, 2011

Things I am learning



Walgreens sells tegaderm, CVS does not.
Neither Walgreens or CVS sell duoderm.
Insurance does not provide enough duoderm or tegaderm for a baby who sweats a lot or is learning to eat food.
If the top of the NG tube happens to pop open, stomach contents will be
deposited wherever Leo is laying.
Brothers are not grossed out by stomach contents, but sisters are.
Jordan is the best assistant when I need an extra hand inserting said NG tube. Amanda prefers not to be involved.
Complex scheduling can make your life more complex.
Childrens Hospital of Philadelphia has the best chocolate berry parfait in their cafeteria.
If you leave Jonathan and Ben soaking in the tub while you write a blog post, expect a huge mess to clean up!

Monday, September 19, 2011

We are family


“Sometimes do you think we have taken on more than we can handle?” Jeremy asks as he is standing there holding Leo. That is a loaded question and one we discussed while I was cleaning up from dinner. Yes, we have taken on more than we can handle in our own strength. Yes, we are physically and mentally exhausted. Thankfully, God gives us the strength we need for each day.

Rewind just a few hours and Ben is telling me that he is so happy he is a big brother to Leo. Ben is sitting and hugging Leo and playing with him.



Yes, life can be hard most days, but we are family(Leo included) and right now we are a family that is learning to do hard things and maintain a God honoring attitude.

Please pray for us as we have many medical decisions to make concerning Leo in the next few weeks. These decisions will probably involve him having another surgery or two. Please pray specifically that the doctors will be able to zero in on the breathing difficulties he had after his last surgery so that they are not repeated in future surgeries. Also, please continue to pray for his eating. We are slowly, very slowly making baby steps forward in this area.