It's been a lovely (yet over too soon) visit with the in-laws for the past week. I was giddy knowing that I was going to have some extra help for awhile and that the big boys would get an outpouring of love and attention that they so deserve! It is so nice for the boys to have the focus on them for a change and laughter throughout the house. I'm so blessed with the in-laws that I have!
Mr.B's week in hospital was frustrating in a way as he got admitted then was 'ok' while he was there. We did get him right onto a feeding pump and are now running his feeds over an hour and a half every three hours. Yes, I do feel as though I am feeding the kid non-stop. His stomach seems to tolerate that better and his poops improved while he was there, of course that only lasted the first 24 hours when we got home. We are now under the care of Dr.Wrobel (GI) and the good news is that she thinks it is maybe a motility issue with the guts. It just means they slow down to enjoy the view every once in a while I guess. The intestinal tract is the most fussy and unpredictable parts of our bodies and it doesn't take much to send them out of wack (yup, that is the medical term!). I am still desperately trying to find that 'balance' for him, nothing like keeping a 'poop' diary! (yes I am aware of the number of puns I could add in here!).
On a super exciting note Mr.B (the amazing) rolled over from his back to his front twice in a row last night! How fantastic to see! He gets a bit frustrated though at the whole process of getting out of it though! I think that his mind is that of a 10 mth old and it must be frustrating for him to have to try to find the control in his body. He is growing stronger each day and getting bigger which is nice to see. He has so much leg strength that I was talking to a social worker today about the need for a brace for his torso so that he could go in the jolly jumper, he would LOVE it! So if anyone sews and wants to develop something...! I am certain that this little guy will walk one day, he'll most likely need some form of support (like a brace) but I can see him doing it no prob!
One thing that I've come to appreciate along this journey are strangers and how alike in the world so many of us are (rude people aside that is). I met a Mom the other day who just came over while we were in the waiting area at Children's for Audiology and asked about B. She explained how her daughter was finally diagnosed with Noonan's Syndrome and she's now 9. We compared war stories about surgeries and successes along the way. I have to admit I'm not the kind of person that generally would go up to a stranger but I certainly welcome questions about B (when they are asked kindly). It brings to mind a YouTube video I've seen of a young Mom who's little guy was born without eyes and how scared she was to go out in public. Now obviously Mr.B's appearance isn't that severe but people are certainly curious as I would be too. I've met so many warrior Mom and Dad's along this journey that are inspiring and kind. There are so many medically dependant kids in this city that I just need to remind myself that we are certainly not unique in our situation. Although on the flip side of that the last time we walked into Emerge and the nurse asked B's name and said, "oh, that name sounds familiar". Of course the older B gets he'll need a dual room, one for him and one for his file during hospital stays.
Another warrior Mom that I've had the pleasure of coming across the past week is Christine Killam who is walking to raise money for the Make a Wish Foundation. She has three kids and two of them have the same life threatening condition that ultimately affects their bone marrow (without me knowing much about the condition). We've worked hard to bring out the awareness for the importance of blood donation thanks to Braeden but what is also needed are people to sign up to the "OneMatch" Program. The OneMatch is in place to match willing donors to people in need of bone marrow transplant, your match can give them a second chance at life. There is only a 30% chance that there is a family member that will 'match' for a needed recipient so OneMatch opens the door to finding people willing to donate that would be a great match. Her video is touching and without a doubt people need to know, this could be you or someone close to you that will one day use the Make a Wish Foundation. Who knows? One day Mr.B might get to make a wish too!
That kind of brings us to the reality of our lives, I know many of you think or feel that one day Braeden will be 'okay'. While Braeden is doing really well now and is stable he's still a very complex little man while many of his organ systems are watched and checked regularly. This last hospital visit it was brought to our attention that we might qualify for the Palliative Respite Care through the Flames Rotary House (at Children's). It was a punch in the gut but also something that Michael and I have discussed and realized all along, this little boy is not ours to keep, he is here for as long as he sees fit. Now I hope and dream that he'll be here for a good long while but by taking him into the Palliative Respite Care they are subtly saying that they aren't sure he'll make it till his 17th Birthday (Children's is only for kids 17 and under). Of course there are no guarantees, this kid has amazed and astounded Doctors already and will continue to do so of this I have no doubt! The truth is they don't know, no one knows. No one has seen a child the same as Braeden (if one exists) and even so B is his own person doing his own thing on his own timeline. The nurse that first brought it up to me (bless her heart) was tentatively talking around it but when I flat out told her that Mike and I are aware that this kid is here for as long as he'll let us have him she was relieved that I understood. NOW this does not mean that I accept that or even believe it completely but it is what it is and I need people to understand that.
People constantly ask how Mr.B is (and thank you for that) but are seemingly confused when I say that he's in hospital or had been in hospital again. I don't think that it is in our nature as humans or certainly as parents that a child could not just 'get better' and lead a full life. People don't understand B's complexity and there is no way to help explain that as I don't think I get it all either. It isn't as though he has an 'illness' or diagnosis that people can research or relate to and that is what makes it hard. People that are taking this journey with us and are seeing it from the inside have a pretty good understanding (I think) but those that know us more from a distance have a very hard time (it seems to me) to understand that he's not going to be 'better' or for lack of a better word 'typical' (ugh, or worse 'normal'!).
What I do know is that I wouldn't change a thing about him because he is the most incredible little creature that you could imagine. The only thing I would wish to change is that I could take all of his pain for him, every poke, every xray, every surgery, every exam, all of it. I can only do the next best thing, stand beside my little man through it and hold his sweet hand.
For a moment of pure J-O-Y:
