Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

Luke is doing so well with his DAFOs. I think they are helping him get some strength in the correct muscles already. Luke will now do some “finger walking” with us, which is so exciting! Today, I got his braces and sneakers on him and we walked out into the backyard. I had him walk through the grass to his little slide. He wanted to keep walking and said “gate”, so we walked around the house, to the gate on the front of the fence. We walked out into the front yard, then he said “mail”. He wanted to go check the mailbox:) Once we got there, he tried to keep walking down the street!! This boy was unstoppable today! I redirected him back towards the yard so we could go back through the gate and into the backyard. We were outside for a good 20 minutes walking around. He is still a little slow and his balance isn’t quite where it should be, but I’m so excited that he will walk with us now! He wasn’t able to do that just a couple weeks ago.

Luke is now also able to walk while holding onto two of his push toys that he got last year. Daddy modified the Little People push/ride-on firetruck since the handle was way too short for Luke. He added some PVC pipe to make a taller handle and zip tied a 5 lb weight to the bottom of it so Luke has more resistance when he is pushing it and he doesn’t fall down. He also has a wooden Melissa and Doug alligator push toy that he got last year that works great on the carpet. The handle on that one is also too short, so I think Daddy will try and modify that one too.

All and all, today was very satisfying for everyone:) I could tell that Luke was really excited and proud of himself for walking so far. He wanted to keep going and exploring. I’m hoping now that he knows how much is out there to see, he will keep working hard and be walking on his own in no time.

I’m hoping things look up for the rest of the week. Monday, Luke had his 2 year well visit with his pediatrician. He was supposed to get 3 vaccines, but I talked the doctor into only doing 2. He has been pretty flexible as far as the vaccine schedule is concerned. The rest of the appointment was the doctor basically lecturing me about how Luke is no longer a baby now that he is 2. He said that we have to start disciplining and taking away his “baby” things and habits. He also said that parents with children with “special needs” tend to baby their children longer and they end up not being productive members of society. I told him that it’s kind of hard for me, especially since 90% of the time, I have to carry Luke. I told him that I can’t just put him down in the middle of his parking lot and tell him to crawl or scoot into the building. It’s easy for a doctor to sit there and say these absurd things to a parent when they have never had to parent a child with “needs”. I hate using that term, because society automatically assumes that if you say your child has special needs, that they have some sort of mental or learning issue. Luke does not. If anything, I would be more inclined to say that he is handicapped at this point more than special needs. Ok, that was me going off on my tangent about special needs! The doctor just really rubbed me the wrong way with this whole discussion. I’m not sure if he was singling us out, or if he says the same thing to all first time parents of 2 year olds.

Today we had mommy & me class. There are only 2 more classes left in this session. The teacher gave us the registration information for the next session. All of the other kids will be able to move up to the “all by myself” class. That class is like an intro to preschool. The kids get to go for 2 hours by themselves, once a week. The teacher told us that Luke will not be able to go because he isn’t walking. There are 2 teachers doing the class with probably 7 other kids. I don’t see why one of them can’t assist Luke. I was told that we can re-do mommy and me again, but they moved it to Wednesday for the next session, which is the same day and time we do PT.

I’m just really frustrated because it seems like the world isn’t set up for children (or adults for that matter) who don’t fit inside the “normal” box. I don’t think it’s fair for Luke to be left behind. What if, God forbid, he isn’t walking in time for Kindergarten? Would he not be able to attend the “normal” classroom? It makes me so angry and sad at the same time to think that he is missing out on things. He is a very smart and happy boy otherwise.

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.