Mic-Key Button Update

First of all, thank you to everyone who are praying about Medicaid. The nurse hasn't called yet to schedule an evaluation time, but I will let you know when.

Toby did great yesterday getting the Mic-Key button and the barium enema. The Mic-Key may not be permanent because I guess the tube that goes into the small intestine may have a tendency (in Toby's case) to curve around and come back out into his stomach, so we're keeping an eye on him to make sure he is not refluxing up formula. He can't have any food into his stomach because of the risk of refluxing and aspirating it into his lungs. We're praying, though, that the MicKey will be able to stay in. The radiologist thought it was wishful thinking for him to get one this early..we will see! The barium enema didn't really tell us anything yet,; they didn't find anything out of the ordinary. The report will be send to the GI doctor, so we should hear something on Monday.

We have a new Saturday nurse starting today; she will do all of our Saturdays...we're excited to have her start, she's very nice.

Have a great weekend!

New Seating and Medicaid Waiver

Nothing huge to report. Toby's having a good week. I bought him the Fisher Price Space Saver High Chair yesterday. It's a booster seat type chair that has a tray and good head support as well as the 5-point harness system, so we can sit him up more and he can play with things on his tray. He seems to do well in it. Friday we have to go to the hospital for a barium enema - they want to see how his digestive system is working, and also they're putting in the MicKey button (new feeding type of tube). Evan's pulmonologist told Erika (his mom) that there's a very bad respiratory virus going around right now - the hospital went from having 9 patients to 21 patients the next day with it, so please pray that God will protect Toby when we go for his appointments on Friday. 

Just in - a new prayer request. They're threatening to pull Medicaid Waiver on us again. They will be sending out a nurse to do another evaluation. I'm so frustrated and tired of dealing with this. Please pray, pray, pray - if they pull waiver, it will mean a lot of out of pocket expense for us - Right now the waiver helps to cover doctor co-payments, prescriptions, and therapy. Plus when insurance decides not to pay for in home nursing care we will not have nurses either. I'm trying not to panic, and just trust, but please pray. Thank you.

Mickey Button in our Future?

Toby saw the surgeon on Tuesday about his g-tube, and it's doing great - no granulation tissue. They are going to try and put in a MicKey button next Friday. It's hard to explain, but basically it's a button that his feeding tube will screw into. The button has the tube going into his stomach and small intestine, but when he's not getting fed, he won't have a tube hanging off of his stomach, you can detach it. This should help take care of his feeding tube coming out all the time.

His his x-ray showed that his hip is not out of place, which is great, but I still have more questions for the doctor about one leg being shorter than the other. You only notice when you pull both of his legs straighter.

Taking Care of Each Other

Today our nurse wasn't able to come because her daughter was sick, so the day was a little bit crazy. Toby had OT, and so that was good. He definitely seems to be getting stronger - holding his head up more, pushing up on his arms, etc. The OT hadn't seen him in 2 weeks, and she was impressed with his improvement, so I was excited about that - I love all the ideas we're getting to work with him.

I have to share a fun story about our oldest son Conor - who's 4 and Garrett who's 2. I had a bunch of things to do with Toby before I laid him down for a nap, so the boys were in their room (they have bunkbeds) and Conor was reading books on Garrett's bed. So, I finished with Toby and then went in to put the boys down for their nap. Well, Conor looked at me and said, "Mom, I got Garrett ready for bed, I read him a story." Sure enough, the music was on, the fan was on, the blinds were pulled down, and Garrett was tucked under his covers and was ready for his nap!!! It was so cute - and I CAN'T believe that Garrett actually let Conor act like the "dad" and put him to bed. I just had to share, my babies are all growing up so fast. Toby is 7 months now!! Have a great evening.

2nd Myelo Clinic Appt.

Toby's Myelo Clinic appointments went well today - we were there for a LONG time, though. His renal ultrasound showed no swelling in his kidneys (good news). He had an OT evaluation, and we also had the Physical Medicine Doctor and the Orthopedic Surgeon look at his hips. They didn't seem too concerned, but his left hip might be out of place (which I guess seems like something to be concerned about - but she said they really can't do anything about it now or wouldn't do anything about it now - not sure why, need to ask more questions about that). They did take an x-ray of his hips to double check, but we didn't get those results. The Developmental Pediatrician gave us some good ideas for a medicine and an herbal supplement that puts good bacteria back into his bowels to help him with his belly distension, etc. We also were able to get a couple of prescriptions for some equipment (a Tumbleform Feeding Chair and a Wedge for positioning) that will help Toby sit up with help, and also to strengthen his body when he's on his tummy. I'm looking into how we're going to get these items and who's going to pay for them, so pray for us on that. We also saw the opthalmologist about his eyes (these kids have a presdisposition to eye crossing, etc. and it runs in our family - i.e. Conor had eye surgery for this). There was just enough time for him to look at Toby and say that his eyes were moving together, but we didn't have time for him to actually dilate his eyes to look at the nerve. It's not urgent, so they will complete this at the next Myelo Clinic in 3 months. We still have to straight cath Toby every 4 hours - to keep his bladder empty. The plus about this is it will keep his kidneys and bladder healthy, which we want, so I'm okay with doing this. I think that's all - sorry for the LONG update. I'll try to post some new photos soon - Toby weighs almost 15 pounds and is 24 inches long - He's getting to be a big boy! Have a great weekend.

J-Tube Replaced Again - Conor's 4th Birthday

Well, Today is Conor's 4th Birthday!! We had a party with Evan at the park and some friends. It was a lot of fun. When we arrived home around 2 p.m. Toby's g-tube came out again - this time ALL the way out!!!!! We're headed back to the hospital in about an hour to have the J-tube part replaced again in Radiology. I am beginning to wonder if the G-tube is defective, one of the pieces fell off too. Plus his g-tube site has been bleeding a little, so it's been irritated - we will ask the Radiologist about this, and if he doesn't know we will try the surgeon that put it in. We're still having a good day - It's just frustrating for us to be headed back to the hospital for the 3rd time in 10 days about this feeding tube! I am thankful we only live 20 minutes from the hospital - that is a good thing.

Toby went with us to the park for Conor's birthday - I can't believe my baby is 4 already. He will be in preschool in the fall - time does go so quickly! We'll post another update soon.

GI Doctor Orders

I was able to speak with Toby's GI Doctor and she's starting him on a liquid stimulant called sennacot (spelled ??? not sure). She also wants him to have a Barium study done in the next few weeks to see how his bowels are functioning.

Toby still has a cold, but he's tolerating it well. We are going to see all of the Myelo Doctors on Friday at Clinic. It's the long day where we see the Developmental Pediatrician, Orthopedic Surgeon, Urologist, and Physical Medicine Doctor. He may also see the OT & PT from clinic. He has a renal ultrasound scheduled also; pray we have a good day. Our biggest concern for this appointment is his hips - they seem really lose and his legs just don't ever stay together - they flip out all the time - he's always doing the splits. We will see what they say about this. Thank you for praying.