Tag Archives: illness

The Stories Iโ€™m Told

I met a gentleman today. Like many elderly before him, he saw me walking around in hyvee with Felix in his carrier, and said that it wouldโ€™ve been nice to have when he had been raising kids. He then went on to tell me his life story.

His wife passed away when they were both 35 years old. They had a son and a daughter, and the daughter was still a baby at that time. So he raised his kids alone. He never remarried.

He had polio as a teenager and beat it. He joined the Army when he was young and was in the Korean War. He enjoyed the Army, and worked with explosives. Not explosives like we have nowadays he said, but the ones with glycerin, that can go off for any little reason. He enjoyed traveling and all that he was able to learn and do.

Then he jumped ahead to talking about his wife passing away, and raising and taking care of his son and daughter. He said his son passed away at age 51 to MS, and his daughter passed away at age 46 (I donโ€™t remember why). He said he took care of them as long as he could, until he could no longer. He then helped raise his grandchildren, and they all look out for him when he has medical procedures. He also helps with his great grandchildren now.

This gentleman was proud to tell me he is a born again Christian, and when he was diagnosed with cancer he certainly was not afraid. They told him he had it everywhere, including his lymph nodes and many organs in his body. He had 10 surgeries and watched every one of them he was awake for. He said the nurses and doctors got a kick out of it, but he said itโ€™s his body and he wants to make sure theyโ€™re doing it right. Plus he was fascinated to watch them work. He listed off all the organs affected, which included his pancreas, liver, and intestines (plus several others). Many surgeries, many ICU stays, and even life support. Doctors told him he would never survive it all, but years later he stands there in hyvee telling me about it, cancer-free. He told me about the surgery sites not healing properly and needing to care for it at home. And then he told me about being diabetic and needing to change his diet in order to have a final surgery to repair the open wounds. He changed his diet so much that he no longer needed insulin.

He claimed to never have drank soda, coffee or alcohol other than tastes earlier in life. He said thatโ€™s why he believes he does not have dementia. He currently visits folks at 3 different nursing homes here in town.

He said he drives a pickup truck now because itโ€™s easier to get into. But until recently he had a Mustang. He said just once he got it up to 140 mph. He said heโ€™s heard youโ€™re supposed to die with grace, but he wants to go out with a bang. He wants to enjoy life, every moment of it, and live to be 120! He said the hardest part about being as old as he is, is watching all of his loved ones pass away or lose their memories. But heโ€™s happy to still be alive at AGE 91!!!, against all odds.

I couldโ€™ve listened to him talk all day long. Iโ€™m absolutely fascinated with his stories. And I didnโ€™t even catch his name. Just a photo of him as he left.

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Felix is 8 Months Old!

Felix is 8 months old today! In the last month he has really blossomed. Whatever funk he was in for the first 6 months of his life has definitely passed.

Things he does now:

โ€ข Looks at faces, makes eye contact, smiles, and has stranger anxiety.

โ€ข Rolls front to back, back to front.

โ€ข Reaches up and out with his hands to grabs objects.

โ€ข Sits for a few moments at a time, with improvement every day.

โ€ข Stays on hands and knees for a few moments with help.

โ€ข Squeals, babbles, and razzes all the time.

โ€ข Enjoys bath time (and swimming at the Y).

โ€ข Likes playing games and singing, like โ€œPat-A-Cakeโ€ and โ€œItsy Bitsy Spider.โ€

โ€ข Actively and happily participates in physical therapy at appointments and at home.

โ€ข Drinks breastmilk on demand, and eats purรฉed baby food twice a day.

โ€ข Sleeps in his crib (no longer his bassinet) for longer stretches of time at night. But still doesnโ€™t nap well.

โ€ข Still prefers the outdoors.

Iโ€™m sure there are a few things Iโ€™m missing. But these are all big changes that came all at once. He also got his 6 month shots today since he was on a delayed schedule due to his previous CMV infection. At his appointment he weighed 18 lbs 1 oz, and was 27 inches tall.

Now if I could just get him to smile for a picture, it would be really helpful for these monthly updates. Haha!

Felix is 6 Months Old!

Felix is six months old! He had his six month check up today, and updated his vaccines. He was running a little behind on vaccines because for his four month check up he was fighting quite the virus. It turns out he had CMV. If you don’t know what CMV is, I very strongly suggest that you research it. I knew nothing about it before Felix was diagnosed as having had it. I believe he contracted it after he was born rather than in utero, so we have that working in our favor. However, since the symptoms last so long, his development is delayed a bit. That would be why he wasn’t meeting his milestones or doing much of anything for a couple of months earlier in his life.

However, as of today, the doctor and nurse both are not concerned with the way Felix behaves or appears in the doctor’s office. The nurse has been doing her job for well over 20 years, and said Felix seems like a pretty average six month old baby now. As of today, Felix is 16 lbs. 10 oz., and 26 1/2 inches long. He is in the 30th-40th percentile for baby boys of his age. It seems odd to me that he is so small on the percentile chart now, when he was so huge when he was born. But he’s been growing on that path all along, so that is clearly the size he was meant to be. There is no concern there.

Developmentally, when it comes to his milestones, he is a little behind still. I truly believe it was because he was feeling crummy for so long, however he does still have an AEA evaluation and developmental specialist evaluation next week. We want to cover all of our bases so that if there is an issue, we can address it early so Felix has the best chance at having a typical childhood.

As of yesterday, Felix started rolling front to back a little, and understands how to roll back to front with help. When he gets put into a bouncer seat, he scoots his butt forward until his feet touch the ground, and then he scoots out of it. He sits up without support for a few moments at a time, but likes to throw himself backwards so we have to be careful. He still isn’t good about eye contact, but he is looking at things and tracking movements much better. and he absolutely loves playing around with our new piano. I swear he’s going to be a piano star when he gets older. Lol. Other things he likes are going swimming, taking baths, and most of all, the porch smoking. When he is having a bad day, and is the most upset, we can sit on the porch swing together and he’s happy for the time we’re there. He has also started solids, and really loves meal times. He is still breast-fed for the rest of the time.

Overall Felix is a pretty happy, good spirited young man. But when he’s having a bad day, everyone knows it, and there’s not a whole lot we can do to get him past it besides just get through the day. I’m hoping with time, the bad days are fewer and further between, filled in by many more happy days. He is such a joy to be around when he is in a good mood.

Felix is 4 Months Old!

Felix is 4 months old today! Heโ€™s still a big fan of baths. He loves being walked around outside and looking at the trees around dusk. He feels most comfortable being held by daddy, or in the wrap with mommy. He’s still breastfeeding with formula supplements, but shows a strong preference for the breast now. Also, he shares a bed with us most of the time still, but weโ€™re slowly transitioning him to his basinet, at least for part of the night.

He doesnโ€™t smile much and doesnโ€™t have too much interest in toys yet. We were a bit concerned about his motor and social development, and meeting milestones, but his doctor said he wasnโ€™t concerned just yet. Babies all develop and do things on their own time, not by dates on a calendar.

Heโ€™s still dealing with a little colic, but I think itโ€™s mostly because he doesnโ€™t nap much during the day. Only 15-20 minute naps rather than 60-90 minute naps. By the evening heโ€™s way too overtired and canโ€™t settle in, so he cries. Itโ€™s not every night anymore, but probly about 1/2 the time. Heโ€™s also had 3 colds now, with awful congestion. So all the colic, gas and congestion for most of his life could be contributing to him not being a super smiley baby.

Life has to get better from here, right?

Fussy Baby Life

As of next week it will have been four months. Four months since Jarrod and I have had even a moment alone together. Four months since weโ€™ve been able to go out and forget our worries for an hour or two. Four months since we have been able to relax and be husband and wife, best friends, and lovers alone. Four months since one or the other of us wasnโ€™t holding a baby in our arms while trying to go about daily life.

Felix does not allow us to put him down. If we do, he cries. And cries. And cries. We have toys for him. A swing. A bouncy seat. An exersaucer. Play mats. The most time we get out of any of those is about 5 minutes. Then heโ€™s crying again.

Many of our friends and family talked about how excited they were for Felix to be earthside so they could meet him and play with him. Even closer family members…. and here we are four months later and we have not had even one person around enough at all enough for Felix to get to know them. We donโ€™t dare hire a babysitter because Felix would cry non-stop and we are worried about him getting abused or neglected by someone who has less patience for his cries and neediness. Itโ€™s just Jarrod and me.

As for me, it has currently been a year since I was well and whole and able to do things for myself and my family. Last May I was diagnosed with a severe post-breast reduction infection and put on medications that made me very sick. I was on them until November, with 2 surgical cleanings and frequent trips to doctors and having nurses in my home during that time. Once that cleared I was in my 3rd trimester and quite uncomfortably pregnant. And then Felix was born and heโ€™s basically been tethered to me ever since.

Jarrod is admirably working his ass off to support us, his family. And I canโ€™t help but be a little resentful sometimes that he gets to get away most days and get a break from being home. I am at home, day after day, with Felix and the other kids. I try to make supper and keep up with at least some housework. But most of my time is spent with a crying baby in my ear so I canโ€™t even carry on a conversation. He wonโ€™t take naps while playing down in his basinet. He will in a wrap on me sometimes. But generally not for more than 20 minutes at a time. I have no visitors because we canโ€™t even talk. No going anywhere to visit. No grocery shopping. I canโ€™t make supper. The older kids typically fend for themselves for meals.

Then Jarrod will be home after weโ€™re all in bed and Iโ€™ll do my best to make sure he isnโ€™t woke up when Felix gets up 4x a night to eat (breastfed) and stays awake for hours in the middle of the night. He would gladly get up with Felix, but I know he needs rest so he can drive back and forth to work, and also work.

By the time he gets up, I generally barely have time to take a shower, wash bottles, and do a couple things around the house before he has to get ready and leave again and the whole cycle starts over.

We previously thought his issues were colic, but I no longer think that has anything to do with it.

When Jarrod has a day off, Felix doesnโ€™t get nearly as fussy usually. Probably because the frustration isnโ€™t such an issue on those days, because we can pass him back and forth. It is also on those days that some housework can get done, and we can go together and get groceries, and other necessities from the stores, and occasionally go out to eat. But always with Felix with us.

And to go along with it all, Felix is behind on many developmental milestones. He doesnโ€™t smile much at all, and NEVER yet a big, open-mouthed smile. Heโ€™s giggled once or twice staring off into space. He wonโ€™t often look at anyoneโ€™s face. He doesnโ€™t use his hands. Heโ€™s not remotely interested in toys, he wonโ€™t bat or grab at anything. So on top of everything else, Iโ€™m also worried about his development. I think in part, itโ€™s that heโ€™s generally unhappy and has spent so much of his life either in pain (colic and gas) or sick with a virus of some sort.

He does have moments of happiness. He likes baths. Generally for an hour or two in the morning heโ€™s happy. When we leave the house and heโ€™s already in a good mood he does well for a little bit and then just sleeps the rest of the time. He likes being carried around outside and looking at the trees. And he will have a few minutes at a time throughout the day of happiness. Occasionally (and I mean like once every 2-3 weeks) he will have an entire happy day. Those are absolute blessings!

I know this all sounds like one big complaint. Itโ€™s certainly a vent, but not necessarily a complaint. I love Felix with all my heart, and so does Jarrod. We would never in a million years regret having him. Heโ€™s a blessing. But this extremely needy crying stage cannot pass soon enough!

As a side note here: I acknowledge that I have postpartum depression. I am seeking therapy. Meds make me sleep and since Iโ€™m 100% responsible for the household most of the time, itโ€™s not possible to live with that side effect. Itโ€™s hard to feel better, even with therapy, when I never get a break from an extremely needy baby. All I can do is take it one day at a time, one hour at a time, even one minute at a time, until this phase passes and we can move on with life.