It's been a awhile

I realized today that it's been a really long time since I have updated all of you on Max. Simply put, he's doing great! Despite the temper tantrum and whiney phase we're going through right now, he's wonderful.

He's still on the verge of crawling. He gets up on all fours but that one stinking leg gets stuck under him in the transition process so he collapses on his belly. He will pull himself up with assistance from someone's hand on his knees and butt and he's still walking in his walker.

He learned another sign last night to bring us up to a total of four (want, more, drink and all done). He is starting to make the sounds of some words which is awesome! He will make sounds for on, off, in, out and hi. He has also added the letter B in his vocabulary.

We're definitely getting there.

So how is he doing medically? Fantastic. As you saw in a previous post, we are on once a month visits now to the dialysis clinic for labs. We go back on January 6th for our first visit since December 9th. It's a little nerve wracking on my end. I over analyze every whine and whimper. I am constantly over thinking things and blaming them on an elevated lab or maybe the newly found hernia on his belly is bothering him.

Oh the worries that a mother of a chronically ill child has. I need to learn to relax and just enjoy him for him rather than always thinking about whether the amount of juice he had today is raising his potassium. I guess it just comes with the territory.

We have had a couple of follow up appointments this month. We met with high risk clinic earlier in the month. This is when I mentioned the bulge that he has along one of the incisions on his belly. It is a hernia but they are not going to fix it at this time. We do have to watch it to make sure that it doesn’t get “hard.” If this is the case we have to rush him to the ER (this is why I am constantly wondering if his whining is the hernia). Other than that everything is going well. Dr. Cahill doesn’t want to see us again for 6 months.

We had a renal and bladder ultrasound that was done in record time. It usually takes an hour because Max doesn’t like to cooperate, but he did this time so it only took 20 minutes. Thank you Max!!! We had our urology follow up yesterday with Dr. Alam (this too was done in record time- we were in and out in about an hour).  I was hoping to walk out feeling better about everything which I did, but I also walked out a little confused I guess.  Dr. Alam is still thinking that transplant is happening in the spring whereas Dr. Brad and Dr. Ben are telling me summer. So I have no stinking clue what’s going on. I wish we would just set a date.  I did find out that it’s looking like Dr. Sheldon will be back home in Cincinnati by February. So this means that if we do transplant in spring that Dr. Sheldon should at least be able to sit in on it. If Dr. Sheldon says that he will be operating by June then we will wait until then so that he can do the surgery (this is what Dr. Alam’s plan is anyway).

Dr. Alam seems to think that now that Max is bigger he doesn’t feel that he will have as much of an issue connecting the ureter to the bladder, nor will he have to take down the vesicostomy and redo it. All good news!
I asked Dr. Alam if Max was without a doubt going to need a bladder augment or if there was a chance that his bladder could have improved. His answer was that his bladder could improve! There is a chance that Max’s bladder could have gotten bigger and that the pressures could have gone down. IF this is the case, Max’s vesicostomy could be broken down so that he can pee on his own. This would also mean that we would have to catheterize him through his penis several times a day, but I will take it. Not that I want to do it, but the fact that Max would urinate on his own would be a miracle. IF Max’s pressure are borderline Dr. Alam said that Dr. Sheldon will make the final decision on what the next step would be for Max’s bladder.

We will be doing a VCUG and urodynamics in a few months to see what his bladder is looking like. Dr. Alam has also increased his Ditropan in hopes that it will help his bladder improve. Ditropan is a medication that reduces muscle spasms of the bladder and urinary tract.

So this is where all of you prayer warriors come in. I have been silently praying for this on my own thinking that it was an impossible prayer request. Now I am asking for all of you to pray for Max’s bladder. Please pray for it to have gotten bigger, for the pressures to have decreased and for the grade five reflux to have either decreased or gone away.

Dr. Alam told me to never give up hope but that all of this is a long shot. The things that we are hoping and praying for are obviously the best case scenario but it would be a miracle if they happen. Max needs another miracle, so I ask all of you to please pray. Please have everyone you know pray that Max’s bladder improves and that he doesn’t need a bladder augmentation.

Please pray for the best case scenario. Please pray for a miracle.