Our Grandson Updates:  Linkin and NEW ARRIVAL, Liam

As many of you are aware from this site, our grandson was born with cystic fibrosis.  We have all been affected by his genetic abnormalities, but, even though it is not a good thing, the entire family has been there for him and we will continue to do so.  BUT, we don't want people to feel sorry for us, we want people to help in the fight to wipe out cystic fibrosis and to help those with it to be able to live as normal a life as possible.  When we know of things, we are no longer afraid of them and we can fight for a cure; we can help those fighting for it and with it.

So, this is a section on my site dedicated to Linkin and his parents - what they go through, how Linkin responds to treatments, and so forth.  If you know of a family member, friend or friend of a friend battling with cystic fibrosis, I hope that this section can help you to understand and learn a little more about the genetic mutation.  Our intention is to provide hope and support as we know what you're going through.

April 7, 2019

So far we have been really lucky with Linkin.  He's been healthy and gaining weight decently.  We get the occasional bad cough and cold, but overall, as long as we keep with the treatments, he's doing well!

We did have our first hospital stay in February this year.  THAT was a challenge!  At a year-and-a-half, he's running around like a crazy person, touching things and getting into everything he shouldn't be.  So, now we add an IV while he's quarantined in a small hospital room for a minimum of 10 days.  YES.  A challenge it is!  But, he did well!  The doctors and nurses were super good with him and he got through everything fine.  Us, on the other hand, we did too, but I think it was more draining on mom and dad than anyone! 

 

I stayed with him for the first few days 24/7.  We all took turns.  The Ronald McDonald house was amazing!  So helpful and such a blessing for the families that need help.  I'll be honest, I didn't care for McDonald's as a restaurant chain, but I respect them for the work they've done setting up the Ronald McDonald house.  There is nothing better for the people like Linkin and his families to have supporting them. 

Then there is the work of the CF Foundation.  Again, the help they have given to the family has been priceless.  They have helped co-ordinate insurances and needed items Linkin has to have daily, like the food enzymes, the vest, the inhalers, etc.  Until you've gone through it, I don't think anyone can explain it.  Regardless, everyone has been amazing and Linkin is doing wonderfully!  He'll be 2 pretty soon!!

July 1, 2019

This month is Link's birthday!  He'll be two soon.  And we found out that he will soon have a little brother!  Yippee!  Poor grandma with two grandsons that will have her running around the house!  We won't know how Link's brother will be until he is born, but her will be loved and cherished all the same!

Meanwhile, we are moving forward.  Linkin is growing like a weed.  We can't believe he is two this month!  His birthday will be fun with cake and ice cream and toys!

We have been fighting a cough and snotty nose.  So far it hasn't meant a hospital trip, but we can never be sure.  Things could change in an instant.  Yesterday we were at the park by Lake Superior.  It was 91 degrees at our house in Ishpeming and then 68 at the lake.  What a weird experience that was for a 20 minute drive!  We didn't stay too long as Linkin was getting a bit cold and we didn't want to make the cough worse.  Then we went to Big Boy where he ate a lot of cod, mashed potatoes and gravy and french fries.  Most of the day he gets fruit and veggies, but at grandma's house he gets his favorite SPAM!  The salt isn't an issue as he needs that daily.  So, although SPAM is not the best for me, it's something he eats without fighting, so he gets as much as he wants!  And, of course, ice cream...

We also watch Chitty Chitty Bang Bang during treatments.  Due to his cough, we try to do at least 3 a day, 4 if possible.  Twice a day he gets pulmazine.  He'll sit for Chitty, so I'll suffer through it!  Most of the time he will fall asleep by the time we get to the song "I Have You Two", but if I take his vest off and turn the show off, he's up and yelling for me to put it back on!!  Linkin sure loves his cars and music!  Like his grandma there...  :)

November 25, 2019

This month Linkin got a new little brother, Liam Logan. We were afraid that Liam might have to have some major surgeries just as he was born, but we lucked out.  He was born just fine.  A few days later, after some sleepless nights and major fussiness, we all realized he had CF too.  The doctors confirmed it on his first wellness check-up.  He was losing weight, had lots of gas and stomach issues.  The kids started him on creon immediately so that he could eat and that was a major improvement.  He is now gaining weight and not nearly as fussy and crabby.  We have things under control for the moment.  His next appointment is in a few weeks and we are pretty sure that we will have to begin the "poundings" as I call them.  We gently pound the area around his lungs to make sure that he is able to get rid of the mucus in them.  We do that 20 minutes in the morning and the evening.  Once he is a year old, Liam will be able to use the vest like Linkin does.