Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

Luke, Hubby and I went out for a family dinner last night at Ruby Tuesday’s. I was pleasantly surprised that they had semi-healthy food on the kid’s menu. I decided to order Luke the grilled chicken and broccoli. He had already decided what he wanted though.

Our server came and asked us what we would like to drink. Hubby got his usual Diet Coke and I got a sweet tea. Luke looked at the waiter and said “sweet tea”, which usually comes out like “swee sea”. I didn’t think the server would take him seriously, but sure enough, he brought Luke a small straw cup with sweet tea in it. Not the best thing for a toddler to drink with dinner!

The server then came back a few minutes later to take our dinner orders. I placed orders for Luke and myself, then Daddy did his. Luke looked up at the server and said “french fries”.

I guess it’s good to know that Luke can order his own food now, but he didn’t seem to make the healthiest choices:) Next time he’ll hopefully say “chicken and broccoli”.

Our friend’s son had his first birthday party this weekend. He got a huge ball pit with a slide for one of his gifts. Luke had a blast playing in it with the other kids. He was trying to climb in and out of it. We also tried to get him to crawl up the slide. I think he got a great workout because on the way home, he chugged his whole sippy cup of water, which he usually doesn’t do.

I think I may get Luke a ball pit for his birthday or Christmas, but I will definitely get one that is smaller than his friend’s. It took up their whole living room! It’s amazing how many cute toys are available now that I never had as a kid.

I haven’t had the mental capacity to sit down and update my blog. I’ve had a migraine most of the week from dealing with the insurance company, Early Steps, therapists, and doctors.

I had originally planned to contact our Early Steps coordinator to find out when our therapist is coming back from maternity leave and to see if we could get some temporary therapy until then. I called her on Monday and she was to get back with me the next day. Luke and I went to our mommy & me class on Tuesday and I happened to overhear one of the other moms talking about her son getting physical therapy. I asked her if he was also going through Early Steps. She told me that they tried to go through Easter Seals, but their wait was too long. They ended up getting a referral for PT from their pediatrician and went to a local out patient rehab to get him PT twice a week. This got me thinking: “why isn’t Luke getting PT twice a week?”. Our coordinator mentioned asking our insurance company if any out patient rehab places were covered and we could then use them until our regular PT comes back. But, I got thinking about it and decided that our insurance company would probably cover an additional day, outside of dealing with Early Steps.

This is where the battle began. I talked to our insurance company three different times. They all informed me of the same thing, we could do any combination of therapy, up to $2500 per year. Right now, Early Steps does not get paid by our insurance because the PT is “out of network”. The charges are being applied to our deductible, but once that is met, the insurance co. will start paying Early Steps. If we decide to use another out patient PT that is “in network”, those charges would go toward the $2500. So, after many questions and a migraine, the insurance company basically said “Yes, you can do both as long as it doesn’t go over the $2500 maximum”. Sounds simple enough right??

Now enter the Early Steps coordinator. I told her of my new idea, that I want to do an additional day of therapy outside of them, through our insurance. She informed me that if we do that, they will no longer cover for us to use their PT. This didn’t make any sense to me, since our insurance claims it can be done. As long as everyone is getting paid the way they should, there shouldn’t be a problem, right? I thought the main goal here is to help children, not get wrapped up in red tape?!?!

So, where we are right now is to try an experiment of sorts. We went to an out patient rehab today for an evaluation and we will start therapy with them next week. We are also supposed to be seeing our other PT while she is still on maternity leave. We will be meeting her probably at her house though until mid October. We are going to let both places submit their claims to our insurance and wait and see what happens.

The kind of shocking part is, after discussing this with multiple people, we are apparently the first parents to ever do this. Maybe I’m being the pushy, neurotic mother, but I am just trying to get my son caught up to where he should be, especially after so many breaks in our therapy up until this point. My goal was to get him walking by his second birthday, but I don’t think that is going to happen now. I should have sought this alternative out sooner, but having never gone through this messed up process before, I just didn’t know any better. I assumed that the state was doing everything they could to help my son. No one, including the doctors we have seen, has ever said “oh, maybe you should try to squeeze in some extra therapy to give him that extra boost.”

I hope others will read this and maybe have a “eureka” moment and learn from our mistakes, journey etc.

As I’ve mentioned on here before, Luke has pooping issues due to his hypotonia. He has been on Miralax for probably close to 8 or 9 months now. I started weaning him off of it about a month or so ago. I was down to only giving him one teaspoon a day and he was still pooping ok. I thought that maybe this would be the end of the Miralax and the end of the poop issues, but I was wrong.

The past couple of days, he has been withholding his poop again. I can tell by the way he puts his legs out straight and clenches to keep it from coming out. He had stopped doing that for quite some time. I’m not sure if he ate something that plugged him up, and he knows that it may hurt when it comes out, or if he’s just regressing for some other reason.

I’ve had to up his Miralax dosage once again. This process is so frustrating. There is no way I even want to attempt potty training until we get this issue cleared up (and hopefully he’ll be walking by then). I’m hoping that he will get “cleaned out” in the next day or two, then I can begin the weaning process all over again. Ugh!

How sad is it that Luke is almost two and we had never been shopping at Toys R Us?? We have done plenty of shopping at Target, Wal-Mart, the local consignment shops, and online, but we don’t have a Toys R Us in our city. We drove the 35 minutes to the closest Toys R Us today and made it our weekend family outing.

I hadn’t been in a toy store in forever, so I was overwhelmed! I think I had more fun looking at the toys than Luke (and Daddy) did. He loves to help me in the kitchen and is fascinated with my KitchenAid stand-up mixer, so I got him a cute little toy mixer w/ utensils, a toy microwave that lights up and spins, and a toy Dirt Devil vacuum (he’s also obsessed w/ my vacuum). All of these toys were part of their special “Buy 2, get the 3rd free”, which of course didn’t ring up correctly at the register.

We got home and Luke helped me vacuum. It was so cute!! It was also great because I actually got to vacuum without him trying to catch me. He went behind me (butt scooting) and vacuumed too:)

Luke’s physical therapy has been on hiatus for almost 6 weeks now. Our therapist had her baby and has been on maternity leave. Of course, she needs her leave to recover and spend time with her baby, I’m not faulting her for that. She did tell us before she went on leave though, that she was taking three weeks completely off, then she would have some patients come to her house for another 3 weeks. This hasn’t happened yet, which I don’t blame her for.

I am really blaming our early intervention group for not having their act together. They knew the PT was pregnant and would eventually have her baby. They don’t have a back-up therapist, since there is not another one in our area willing to go into the homes to do therapy. I would have gladly gone to a facility to get our therapy, but that option was never even presented to us by our coordinator. We haven’t even heard from our coordinator since we started therapy in May! It doesn’t seem like she is doing her job to me.

Luckily for us, Luke’s condition probably won’t suffer very much by not having the therapy all these weeks, especially since we have been working with him a lot on our own. It does make me a little angry for the other children though, who have worse conditions and will probably fall behind or regress to a certain degree.

I am grateful that our state does offer this program, free of charge, but it is frustrating to know that they apparently don’t care all that much for the children they are helping. Shouldn’t there have been some better planning involved???

I am seriously considering contacting our coordinator this week to voice my concerns. I know it’s probably too late, since our PT will be back soon, but the way E.I. handled this is just unacceptable! I’m just afraid that if I come across as bitchy, the coordinator will relay this back to our PT. I’m in no way trying to get her in trouble or make her come back to work before she is ready.

Is any city or town safe to live in these days? What is this world coming to? I know crime is everywhere, but when it literally happens in your own backyard, it’s a little too real.

Luke and I came home this morning to see a news helicopter hovering over our neighborhood. It was there for quite some time, so I knew something bad must have happened. After all, these people never report good news, right? I got on my laptop and checked the local news to see that there had been a shooting in our neighborhood! It was apparently some sort of domestic dispute, but it ended up in the streets with multiple shots fired. This all happened in the morning when children were getting ready to leave for school.

I have never felt very safe in our neighborhood, but now I really don’t! I’m hoping this was an isolated incident, but I can’t help but feel very creeped out by this event!!

Would it be safer to live in a country that didn’t allow people to own firearms? I know this is a topic which is debated frequently. People are supposed to have background checks etc. done before they buy a gun, but you never know what will make someone snap. I guess I’m still holding out hope that there is that “perfect” place to live.

Luke and I started a new mommy & me-type class this week. It is a lot of fun so far. It is only once a week, but that is probably enough for us for now. It is a little bit of a drive, but worth it. It’s basically preschool with the moms present. This school has a very good reputation and apparently anyone who is anyone sends their children there. It is definitely reflected in the price, but you do get what you pay for. I don’t really care about being one of the “elite” or whatever, as long as we are having fun and Luke is learning new things.

They have a small toddler playground which I was worried about. I thought that Luke wouldn’t be able to play with the other kids (who of course are all walking). I was wrong though, the playground is really cute and he had a blast playing with the steering wheels on the platforms. Unlike our neighborhood park, this truly is a toddler playground, so I don’t have far to climb up with him or worry about how to get both of us down.

I’m glad we signed up for our new class. I hope we are able to make some new friends and continue on to their next program next term.

It’s a little late, but I had a good weekend. I got lots of “mommy time”, which is unusual! Friday night I went to my friend’s Pampered Chef party. It was a lot of fun. The consultant made 30 minute chicken in the microwave, potatoes, 2 kinds of appetizers and chocolate cupcakes. I also had a glass of wine, which was needed after a long week. The consultant heard that I am a stay-at-home mom, so she gave me a DVD about becoming a consultant. I still haven’t watched it. It sounds nice, but I just don’t know if I could do the demos in front of people I don’t know. Out of all of the multi-level marketing schemes, Pampered Chef is one that I may consider though. They do have a lot of products that pretty much anyone can use, and the prices range from $1- $300. I’ll keep it on the back burner for now.

Saturday I got my hair cut, then we spent the rest of the day as a family. Sunday I got another free outing to the grocery store. Isn’t it sad when I consider a trip to the grocery store alone an “outing”!? Ah, the life of a mommy:-)

Luke and I had a playdate today with one of my friends who has a one year old daughter. My friend works full time but happens to have weekdays off sometimes. I can definitely tell the difference between us as mommies.
Since I am home all of the time with Luke, I think I take my time with him for granted. I also think I get more stressed out about things. This could also be from dealing with the issues we have. She seems to be more in the moment when she is home with her daughter and definitely less frazzled. I guess this could just be a difference in our personalities though too.

Like the saying goes “the grass is always greener on the other side”. My friend thinks I am so lucky to be able to stay at home all of the time, but I am kind of jealous of the moms who have a life outside of home. She runs her own business and gets to feel pride in herself and know that she is helping to support her family. I know staying at home is just as important, if not more than bringing in a paycheck, but I do feel like I am missing out on taking care of myself most days. I’m not sure if this is selfish or normal?

With Luke having his hypotonia issues, I would also feel guilty if I went to work full time. This would mean that someone else at a daycare or a babysitter would have to be responsible for his therapy appointments during the day. No one is going to pay as much attention as I would, so I’m sure the PT wouldn’t be as effective.

There is guilt either way as a mommy. I think we just need to somehow find a balance between our lives with our children and time for ourselves. If anyone knows how to do this, please let me know!!