Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

We had a good Thanksgiving lunch/dinner with my husband’s family. We all met up at a restaurant on the water that had a yummy buffet with every Thanksgiving dish imaginable. It was wonderful to sit and eat, then not have to worry about cleaning up. Luke got his DAFOs (braces) on Tuesday, so this outing was the first time he really got to test them out. We helped him walk around outside on the docks while he watched some birds. The braces really helped with support, but his knees are still hyper-extending

After dinner, we went back to hubby’s aunt’s house where Luke played on the wooden train and playset she has for her grandson. He was able to swing all by himself on the big boy swing:) I was really happy that he was able to hold on and stay stable by himself. He also got to open birthday presents from the family. He got a cute Gap outfit, Tonka truck, and a Leap Frog refrigerator toy.

Well, I was very disappointed by the lack of RSVPing for his party today. I never heard anything from two “friends” that I had invited. I attended the one friend’s son’s 1st and 2nd birthday parties, but they didn’t even have the courtesy to RSVP “no”. They only live about 3 miles from us too! In the end, the only people who showed up were: hubby’s mom and stepdad, his uncle, and one of my other friends with her hubby and 2 kids. It ended up to work out ok though. We weren’t overwhelmed with people in the house, and Luke had a couple friends to play with.

Luke’s party was Sesame Street themed. I had SS tablecloths, napkins, plates, banner, and 2 little “murals” that I found online. I also ordered a cute Sesame Street cake from our local grocery store bakery. Luke’s present from us was the Sesame Street playset that you can only get at Target. He also got a big bag of Mega Blocks from Grandma and Grandpa, 2 sets of jammies, a Thomas sweatshirt, a book, and the Thomas beginner train set from his great uncle, and a cute set of animal blocks from our friend. All in all, he made out pretty well!!!

I’ve learned a couple lessons from this year’s party. Next year, we will have the party a week before Thanksgiving and probably do a party with just friends. I was pretty let down by the rest of the family that didn’t show up, so they can come over on his actual birthday next year, or combine it with Thanksgiving.

Luke’s 2nd birthday happens to fall on Thanksgiving this year. We decided to have a party for him that Saturday so he didn’t have to share his big day with the holiday.

I mailed out birthday invitations this past Monday and I haven’t gotten any official RSVPs yet. I asked a couple family members who I happened to talk to on the phone, but they aren’t able to come. I’m wondering how long I should wait before I start calling people to get answers. I need to order the cake on Wednesday since the store is closed on Thursday and Friday will just be too hectic.

I’m considering rescheduling the party and sending out e-vites to everyone if no one is able to make it on the original date. Maybe I shouldn’t have done it so close to Thanksgiving, but it wasn’t an issue last year. I don’t think it’s fair for a 2 year old to have a crappy party just because people are already busy that weekend.

What should I do???? Help!!

Well, I think Poopsie is going to live! He was still sick yesterday, so back to the vet we went. The doc rechecked his bloodwork to make sure his kidneys were still good. Nothing abnormal showed up. She thinks that he had Pancreatitis, which is just inflammation of the Pancreas. They don’t know what causes it. She gave him some pain medication and some anti-nausea pills. He seems to be back to normal today and is eating again. He has been getting in lots of cuddle time with mommy:)

I think Luke is happy that his kitty is feeling better too. He has given him lots of hugs. Tonight on his way to bed, Luke told the cats “night night kitties, sweet dreams.” Of course, this was all in his almost 2 year old language, but we understood him:)

I am stressed out enough with my Mommyhood duties with Luke, but things got more stressful yesterday.

My cat of 9 years, Poopsie got very sick and was throwing up. He has done this in the past and was fine, but he seemed much sicker this time. It started on Monday morning, but by Tuesday morning he wasn’t any better. I racked my brain to try and figure out what he could have gotten into to make him so sick. The only thing that came to mind was my beautiful Anniversary flower bouquet that my sweet hubby got me. I immediately Googled “flowers poisonous to cats” and sure enough, Lilies are on the list! They are highly toxic to cats and can cause kidney damage and failure in a matter of hours. We already have one cat who has kidney disease and almost died, so I called the vet and dropped Poopsie off on our way to mommy & me class. They did some bloodwork that came back ok, which was a relief. If he had gotten into the flowers, one of his levels would have been way too high, but it was normal. The doctor said she wanted to keep him overnight on IV fluids just to be on the safe side. She also took an x-ray to make sure his kidneys, pancreas and stomach weren’t inflamed. She re-checked his blood this morning and said he was good to go. She doesn’t suspect that he ate any flowers since he seemed to be getting better.

Luke and I went and picked him up this afternoon and brought him home. Luke was so cute, he kept saying “Poopie, sick, night-night”. I told him yesterday that Poopsie was sick and had to stay overnight with the doctor. Today when he got up, he noticed our other 2 cats, looked around and said “Poopie, sick, bankie?”. I had put a towel in the cat carrier and Luke thought it was Poopsie’s bankie. So cute!!

Poopsie was fine for a few hours tonight, but then threw up all over the laundry room. He did drink lots of water after though, so hopefully he was just getting the rest of the yuck out of his system and will be ok. Poopsie is Luke’s buddy and he was my first “baby”, so we want him to make a full recovery and stick around for awhile longer. Please send Poopsie some hugs and prayers!!

I think that floral shops should be required to post a list of which plants and flowers are toxic to household pets. I never would have guessed that Lilies are on the list. We will never get them again!

Our county health department finally opened up another H1N1 clinic. They are doing once weekly appointment clinics at their office as well as weekend clinics at the high school.

I made an appointment for Luke for today. I didn’t even bother making an appointment for myself because the way their website reads, healthy adults are not in the “at risk” category and couldn’t get it. I ended up being able to get mine today also. Luke got the half dosage pediatric shot, while I got the nasal mist. I made sure to ask the nurse if Luke’s was Thimerosal-free. He will have to go back in 4 weeks to get his second dosage. I am just hoping that they will have enough supply for him to get it, otherwise he will not be fully protected. His pediatrician’s office called me back today to inform me that they finally got their supply as well. I had them remove Luke’s name from the list since we got it from the health department instead.

I was really on the fence about getting the vaccine for any of us since there is so much controversy over whether or not it’s safe, tested etc. I really feel like in this situation you are “damned if you do, damned if you don’t”. It’s not even peak flu season yet and the number of cases of H1N1 is continuing to climb. I guess at some point you have to surrender and put some trust in someone. I feel a little relieved now knowing that we don’t have to keep avoiding public places or keep bathing ourselves in hand sanitizer.

Luke and I went for a fun walk to the park this morning. We saw all kinds of interesting things, including this snakeskin and beautiful hawk. He also loved pointing to the airplanes flying overhead and listening to the birds. It’s amazing what you can see and experience if you just step out your back door. It seems like people these days are content to just sit inside and watch endless hours of television, play video games and just be on the computer. I am guilty of that too sometimes, but I’m hoping to instill a love of nature and imagination in Luke. My husband and I both grew up with big backyards to explore. He even had a pond with ducks! I want Luke to have the best of both worlds: access to technology and amenities that we didn’t have growing up, as well as some “old fashioned” fun.

I was brave today and decided to get Luke some watercolors. He’s only ever done painting at our mommy & me class, but that was tempera paint. He did a pretty good job, but didn’t grasp the concept of having to dip the brush in the water, then into the paint. He was happy just dipping and swishing the brush in the water dish:) I think he did pretty well though and enjoyed it. We sat and painted together for almost an hour!! I may be really brave next time and get him some finger paints!

Well, Hubby went back to work today. He had about 2 weeks off, which was nice for all of us. Luke really enjoyed having Daddy around. Now it’s back to working long hours and long days for Luke and me.

We spent two nights at a local resort on the beach. It is apparently off-season because we practically had the whole place to ourselves. There were only a few people at the pool. It was nice to feel like we were far away, but only a short drive from home if we needed to make a quick escape.

Luke and I went to his new physical therapy center today so he could get fitted for his DAFOs (braces). They decided to go for the more aggressive, higher braces to help keep him from hyperextending his knees while he is standing. He did great while they did the mold/casting!! I told him that we are making him some special shoes. He loves shoes, so I thought this would help. I hope he does ok wearing them once we get them back in a couple weeks. Luckily, it’s getting a little cooler here, so he can wear pants over them. I’m anxious to get him in the braces so they can help with his positioning and he can get stronger. It is scary though to have to put your child in any kind of brace. Hopefully, he will get stronger and stronger and we can eventually phase the braces out. I know that kids sometimes have to wear them for many years though. We also get to buy some new shoes that will fit over the braces:) I will post some pics of Luke wearing them in a few weeks.

We had to say goodbye to our physical therapist today. This is her last week at that facility. We will be seeing a new PT, but her schedule is booked up until the first week of December. Ugh, another setback. So, now we are back to PT once a week with our EI therapist until we can get in with the new PT at the rehab facility. When will things get easier???? I’m hoping and praying that these braces will help Luke get stronger and he will be walking in the next few months. I’m going to need physical therapy if I have to carry him for much longer.

I grew up in a very small town up north. I think the population at the time was well under 1000. Everyone knew everyone else, which was good and bad. Halloween was always a fun holiday for us as kids. My family lived outside of town, but we would go to our grandparent’s house in the village and do our trick or treating from there. It was such a safe neighborhood, I don’t even remember our parents going with us. It was always my two older sisters, me and a few of our friends and schoolmates. We knew which homes gave out the good treats, which ones gave out the gross treats, and the creepy ones to stay away from (they were usually the old, grumpy people who refused to give out candy). There was even one house that went all out and invited everyone inside where they had the whole house decorated with all things spooky.

What I described above almost sounds like something I would now see on “Leave it to Beaver”. This was only 25-30 years ago, but it seems like a lifetime. My hubby, son and I now live in a medium-sized city. This is our third Halloween in this house. Our first year here, we had maybe 10 groups of trick or treaters. I had plenty of candy, but not so much leftover that I ended up gaining 10 pounds! Last year, Luke was 11 months old. I thought it would be so cute to dress him up and hand out candy. I made up a bunch of little treat bags and had him ready to go. We had ZERO trick or treaters show up!!!!! I was so disappointed and I ended up having to eat a bunch of candy. I think I just threw out the remaining few pieces probably 2 months ago:) This year, we decided to not even bother buying candy and we kept our front lights off (we’ve become the old, grumpy people!).

I left the house tonight around 6:30pm to pick up some dinner. I saw one family out and about with their two children. They must be new to the city, because no one apparently trick or treats here. I also saw a few homes with signs on the front door. I couldn’t read them from the street, but I’m assuming they declared that they had no candy to give out. I felt very sad on my way home. How could things have changed so much in such a short time? Is our neighborhood really that bad? I think people are afraid to go out to their own neighbor’s homes anymore because of all of the foreclosures and the increasing crime rate. Most of the local parents I know don’t take their children trick or treating. They do something called a “trunk or treat”, which I had never heard of until last year. For those of you who have never heard of it either, it’s basically a bunch of people parking in the church (or other “safe” location) parking lots, giving out candy from their trunks. I’m still not sure how it works. I don’t know if we were to go and take Luke, if that means we have to give out candy also?

We decided just to stay in this year since Luke isn’t even two yet and doesn’t really need candy. I know a few of my friends thought it was just awful that we weren’t doing anything. We attended two Halloween parties. I think that was enough for Luke this year. We will venture out next year and see what all of the fuss is about. Hopefully we all come home alive:)

What is Halloween like where you live? I’m curious to know if it is like this everywhere now? It seemed “normal” in the neighborhood where we lived in North Carolina before moving here. The neighborhood kids actually went to the homes in the neighborhood.

Happy Halloween!!!

We went for our second follow-up with the neurologist this week. I swear, their follow-ups are how they make a profit. We actually saw the neurologist this time instead of the nurse. He didn’t have any new information for us, of course.

The doctor told us that he wants to repeat the brain MRI in one year even though it came back “normal”. He said that Luke’s white matter isn’t as broad as it should be. He said this could be a “chicken or the egg” dilemma though. Since Luke’s gross motor skills aren’t where they should be for his age, his white matter is going to reflect that. I’m guessing that if you compared Luke’s MRI to one of a normally developing 9 or 10 month old, the white matter would be similar. I am really on the fence about repeating it for a few reasons. I don’t want Luke to have to go through the traumatic experience again. It was also disturbing to us as parents to see him scared, then 2 seconds later go completely limp from the anesthesia. Another thing to consider is the fact that we will have to pay out another $1000 deductible. I would definitely not think twice about paying out the money if I knew for certain that the procedure was critical for more answers. We are going to wait and see what happens. As long as Luke is continuing to make progress with his physical therapy, then we are going to hold off.

The neurologist also said there are a few other tests to perform that weren’t already done with the bloodwork that Luke had done while he was under. There are 2 blood tests that check for other kinds of dystrophies. They can also do a muscle biopsy to check for other genetic muscle conditions. There are no cures or treatments other than physical therapy for any of these outcomes. Again, we are going to wait another 6 months to do any additional blood tests or biopsies.

I also asked the doc if he had patients in the past with hypotonia who had all of the testing done, but found no cause. He said “yes”. Well, that doesn’t really make me want to do them either.

Does anyone out there have any experience with all of these crazy tests? I feel like my son is a pin cushion and a guinea pig! I just want to leave the poor boy alone for awhile and let him have fun. Maybe then he will feel more compelled to be “normal”!!!