Our Grandsons' Updates:  Linkin and 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.

February 25, 2020

Linkin weighed in at 30 lbs!  It's exciting because we weren't sure if he was going to hit that goal until he turned 3 or so.  With CF, it's a bit of a struggle to get the kids to gain weight.  It's so very important at this point in their lives to get the food and nutrients into their bodies and used appropriately.  Since day one they take their enzymes and their vitamins and the results are clearly showing here.  So, yippee!  Congrats Linkin!

Liam is also growing like a weed!  Again, making sure they get the nutrition they need is so crucial to their ability to function normally.  To be quite honest, eating is not something that people in our family have a problem with.  Grandma has always been a big "feeder" to family and visitors.  Grandma really shows it too as I am always on a diet trying to lose the weight.  

Anyhow, so far so good with the kids!  All is well for now!

August 23, 2020

Oh geesh!  Where has the time gone!

 

December 9, 2020

So we flew right past Liam's 1st birthday this year without the pomp and circumstance we would have loved, thank you covid.  But, that's ok because we would rather be safe than sorry.  It's scary with Tif being a nurse and Mikayel working in essential services.  They never know when they may be facing an infected person even though they both take the utmost care in adhering to the medical precautions and recommendations.  They do, but cannot control those who do not.  I won't even go on my rant there...

But the kids are doing very well!  They both stayed with us for the weekend for the first time.  I'll admit, I'm not used to having a 1-year-old and 3-year-old in the house with an 8-month-old puppy!  It's very noisy and extremely challenging!!  But I wouldn't give it up for the world.  I love my kids and grandkids more than anything and every day is a blessing to have them in our lives.

This year will be different for the holidays, that's for certain.  We remain at home unless we must go out for groceries or doctor's visits to protect ourselves, but mostly, to protect these babies and my kids.  I'll give up a holiday, haircuts, nights out on the town, eating out and anything else if it means we get years of future visits.  I'm not a youngin' any more but, if covid comes to greet me, I'm not sure I'll be able to fight the good fight.  Regardless, I'll do what I must as I know they will too.  I hope that all of you will heed the warnings and do what is necessary to bring this virus under control.  Wear your masks, deal with a little inconvenience for a few months.  If we had done this in the beginning, we wouldn't be in the dire straights we are in now.  And DO NOT tell me that you can't wear a mask.  That is bs plain and simple.  And don't tell me if God wants you to get it, he'll give it to you.  More bs.  First off, God doesn't always help.  He will send people to do his work.  Secondly, if you are having a heart attack, you have a gash that requires stitches, you are sick with whatever problem, you go to see a doctor.  Coronavirus is NOT a typical flu and you CAN die or end up with horrible side effects.  THAT IS A FACT.  Like it or not.  Believe the political morons using you for their greed and control or use the brain God gave you to friggin' help yourself and all those around you.  These idiots use you because you are either too lazy to help yourself, you want someone to blame for your situation and they are giving you one you can support, or you really are THAT stupid and you need to start learning how to think.  Hate me for saying it like it is, but that is life.  If you respect trump for "saying it like it is" lies or otherwise, respect me for saying it like it is as the truth.

Rant over.  Back to the home stockade.

 

April 7, 2021

Time does not stand still, for sure!  The kids are growing like weeds!  Linkin is coming up to his 4th birthday already in just a few short months and Liam will be 2 this year.  They are doing really well, thank you to all of the advancements that are being made through the Cystic Fibrosis Foundation.  I am so grateful for them!

Personally, I have joined Grampions which is an organization for Grandparents who have grandchildren with CF.  It seems like a really nice group of people.  It's hard on a lot of folks who are thrown into this area and know nothing about it.  I was lucky in that our kids found out they had the gene for it ahead of the births so we got to do months of research and learn.  It still was very disheartening when we found out, but we knew what we had to do from the get go.  It doesn't make things easier, but being educated sure helps you to understand what needs to be done.  Then you just do it.  You learn to watch for signs.  I think the toughest times are when they are infants because you don't want to hurt them, you want to make sure they get all of their nutrients and they can't tell you their issues.  You are always on high alert.  BUT, as time moves on, you get to understand it more, you learn more, and it does become easier.  We don't live less, we live differently.  Our chaos is planned.  Our spontaneity is planned.  We always have the bags packed with all the necessities so that spur of the moment can still be reasonably accomplished.

But, the kids are doing well and we are happy.  Don't get me wrong, there are days when I think Tiffany and Mikayel want to scream...insurance issues, drug costs, hospital runs, every little cold, sickness can be hell, daycare, covid, flu.  There are times I want to scream and I don't have them daily.  We do what we can to help and be there for them financially and physically.  We have lost family - uncles, cousins, aunts, friends - because they do not understand and think it's an excuse for whatever they don't like, but that is fine.  We don't need the extra drama.  Life goes on.  In the end, it's all going to work out.  We just do our parts and live our best.