Josiah in Daddy's handSherry is much better. The antibiotic did the trick. I am not sure the last post did justice to the amount of pain that Sherry was experiencing. The mastitis led to a very in depth conversation about nursing. After a long and very emotional discussion we decided to move to formula. I can not emphasize how hard the decision was for us. Several things factored in with no single factor tipping the scale. The reasons included the our overall family dynamics, the mastitis, nursing benefits for Josiah, time required to feed when Sherry was the only adult int he house, Caden’s often urgent need for attention (suctioning, retching, etc). Maybe I will share more on the process we went through to make that decision at a later time, but it was not easy. One thing we did not realize as a result of this decision was exactly how much of a financial hit formula would be. Never mind the other financial hits we have been taking. The formula cost alone is over a $100 per month. How is it that such a little guy can consume so much formula in a month? I guess the fact that Caden’s three to four cases of formula per month has been paid for by my insurance and Medicaid has kept us in the dark as to how much this stuff actually costs.

Josiah – Update

Nana and JosiahIsn’t he a beautiful baby? That’s right, I am a dad who is okay with my baby boy be described as beautiful. Check out the picture of him and Nana on the left.

Josiah was nearing 12 lbs last week. He will be 6 weeks old on Friday of this week. He is nearing the “sleeping through the night” window. Most PDF (Parent Directed Feeding) babies begin to sleep through the night by twelve weeks of age. Some as early as 6-8 weeks. Josiah is only eating once between 10PM and 7AM. He pretty much splits the night with two four and a half hour stretches of sleep right now. I fell confident that he will have dropped the middle of the night feeding within the next 2-3 weeks.

Caden

We had a rough couple of weeks with Caden but things are clearing up now. Caden got a pretty nasty sinus infection and ended up going through two rounds of antibiotics to shake it. He spiked a 104 plus fever one night that came with a ton of goobers. I was up until about 3am that night suctioning and comforting him. He slept most of that night on the floor of his room laying in my arms.

Since we have had some rough weeks with Caden, Sherry and I have been taking turns attending church on the weekends so that we both would get to go. I have attended the 8am service at the new N. Charleston Dream Center. I can then make it home in plenty of time for Sherry and Riley to attend the 11:15 service in Summerville. This past weekend while Sherry was at church, I was changing Caden’s diaper and snagged his g-tube button with his t-shirt. The button partially came out of the hole in his belly and he screamed in pain. This is not the first time this has happened, but it is just as emotional for me every single time due to the pain that Caden experiences. I don’t like to see my boy in this kind of pain. Fortunately we had a spare button that I was able to put into Caden’s tummy. Not having a spare would create a fairly urgent need to get to an emergency room. The hole in Caden’s belly can start to close up in a matter of hours if something is not in place to keep it open. Not to mention, then more closed it is, the more painful it will be to get the replacement button inserted.

Other than massive goobers and a g-tube incident, Caden has been doing great. We are still in need of care givers for Caden if you know of anyone who might be interested. Sherry is no longer able to run solo errands or work-out during the day because we lost our access to our only daytime sitter. Our sitter took a full-time nanny job. We are also in need of a shepherd for Caden at church. A shepherd is a 1-on-1 caregiver who can monitor Caden and take care of any special needs that might arise. (i.e., suctioning, nose wiping, etc) Caden still struggles to swallow anything including his secretions (saliva / spit). His saliva generally runs out his nose. This causes people to think his nose it running, when in fact he has simply drooling out his nose. What we need is a person who will be able to care for Caden in the church nursery (mostly chase him with a tissue and make sure he does not chew toys). Due to a diagnosis of immune deficiency, Caden needs to be monitored to make sure he does not chew on toys that other kids have handled and he needs to have his hands cleaned if he touches the floor where other kids have been playing. This helps prevent the amount of germs that get into his saliva which end up in his nasal cavity due to the path of least resistance being his nose caused by the sub-mucus cleft palette. Anyway, please let us know if you are interested in helping in this area or if you know anyone. Hopefully Caden will soon be able to sit through church with us, but for now he just does not have the patience and self control for that. Big Boy Riley has been sitting through church with us for almost two years now.

Other Stuff

Caden, Riley, and JosiahThe rest of us are doing pretty good. Riley is maturing way faster than I am ready for on most days. He continues to go through spells where he seems starved for attention. He does have two high maintenance little brothers who require a little extra TLC. Riley does a great job of helping take care of both of them.

As for me…all is well. I spent a portion of this week bouncing in and out of the county court house for jury duty. I did not get picked out of the pool for a case, but did serve my time as a jury pool member.

We did have some appliance demons come knocking this past week. Our washer went out last week. Less than two days after I replaced a drive belt on the washer, then the dryer went out. I mean it went OUT. The light even stopped coming on when the door was opened. Fortunately my skills form the late 30’s as an electrics technician on nuclear for the USAF came in handy. I found a schematic of the dryer and was able to track down the faulty part. What could have cost us $250 in labor and parts will now total out at less than $30 and that includes parts and one trip to the laundry mate to dry clothes. I do not get paid my regular $60-100 per hour when working on my own toys. This was like our seventh appliance incident in less than six months. Let’s see, we have had the refrigerator go out twice and the AC unit once. These three incidents caused service calls totaling more than $1500. The dryer has died twice, the washer once, and we had to replace the microwave and the iron.

Even with that, life has been good. I got to sit through a really cool training class last week. The class was a Lean Six Sigma class that I have been trying to get into for months. I missed the last one in June due to Caden’s last hospitalization. Oh yeah…I applied and was accepted into the leave donation program at work. I have already received more than two days worth of donated hours. This is a huge help to us that allows me to assist Sherry in the care of Caden when childcare is not available. This leave donation program may also help us if we have travel out of state wit other clinics or hospitals in the future.