Momentarily- it brings me down

  

This morning a dear friend on FB posted about how she learned today that the kiddies in her 2yr old’s class can count to twenty. And she had a Ds mommy breakdown.  

I assume the differences in her son and other peers his age became very apparent at that moment.

(First I must say, neither one of my girls could count to THREE at that age.)

And I know this mommy, and she is a really amazing mommy and she has unbelievable love and faith in her son (don’t we all). But sometimes getting slapped in face with what it (ds) really is, is harsh.

In reality I think we all have our Ds "sad" moments, or whatever you wish to call them. Some of us might have them more frequently than others, and some of ours might be shorter lived than others, but I guarantee you they are still there. No matter how you feel about Ds.

I know most of the time I have positive things to say about Ethan and most of the time it seems like nothing in regards to DS fazes me. For the most part, it is true. I was able to accept Ethan’s diagnosis within a week, I didn’t love that he had Ds, but I accepted it. I later came to have an “understanding” with Ds, and we became tolerable acquaintances. You know, like a coworker you have to work with that you neither hate or love, but they are just there and you are able to tolerate them well and sometimes you even like them and you even go to lunch occasionally and you actually enjoy it. Yeah, that has been my relationship with Ds.

But lately, this “friend”  that I neither hate or love, is starting to annoy me and frustrate me.

Yup Ds is finally starting to annoy the crap out of me.

I love everything positive that has come out of my life because of Down syndrome. I appreciate the change in myself and my husband. I love that I can honestly say that we are better people because of it. Honestly, I appreciate my children more now than ever. I truly understand how blessed I am now.

But who am I kidding, Ethan’s delays are becoming more and more apparent. Really, it is what is and I can live with it, but sometimes it momentarily brings me down. Not for long, not for days or hours nor minutes, just split seconds. I know I cannot dwell on the negative. I can’t benefit Ethan if I stay in my funk.

But damn. It sucks.

To know that Ethan is a 2yr old little boy that functions more at a 1yr old level. To see your child struggle in areas where other 2yr olds are just flying by him.

The thing is, I am NOT in denial. I am around A LOT of people with Down syndrome. We have many dear friends with children with Ds of all ages. I’ve seen them all! From the ones that can talk your ears off to the ones that are nonverbal at age 20. So I know that anything is possible. And in all honesty, I will handle whatever comes our way and I will make the best of it. While it might momentarily bring me down, I know it will all be ok. But I just know that anything can be our reality.

Sometimes I think to myself, “what if Ethan is nonverbal?”

And I know it sounds ridiculous, I know. He is only 2.5yrs old, his speech is naturally delayed because of Ds and there might be other underlying issues. I can’t predict what he will or will not be as an adult or as a person in general. I feel in my heart that Ethan will talk, but at a later time, just not today or tomorrow. And I know it is “typical” for kids that are usually walking earlier than other kids with Ds, they might be lagging behind in speech  and those who arent walking have better speech.. I know, I really do know.

But at those brief moments when that thought crosses my mind, it momentarily brings me down.

Every day I tell Ethan, “Say {insert word} ” to try to get him to repeat a word back to me. I’ll gently grab his jaw and move his jaw for him.

Lately whenever I tell him to repeat a word he’ll grab his jaw and move his mouth for me… or he’ll just move his lips but NOTHING comes out. NOTHING. Not even a squeal. I see the desperation in his eyes, with a slight hint of disappointment. Right after he does that he runs off as if trying to hide the fact that he can’t do what I asked him to do. OR he’ll throw himself at me and starts to wrestle as if to change the topic. I’ll scope him up and kiss those tiny adorable lips, and I tell him it’s ok.

It’s ok Ethan. I’ll wait for you.

I cant say it doesn’t break my heart, because it does. Momentarily.

He might not be talking yet, but he is still an amazing little guy full of many things I wish I could be. How blessed is he, that he will never know some of the pains I know. My sweet sweet child.

While Ds can momentarily bring me down, there are things that are amazingly beautiful that have come out of it and my love and joy for Ethan is infinite.

-erika

The Tales of a Toddler - From Crib to Toddler Bed

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 We’ve been talking about converting Ethan’s bed into a toddler bed for a while, but of course we just like to talk a lot and never actually do stuff until like years later… finally this weekend we converted his crib to a big boy bed!

He took his first nap in it on Sunday. We barricaded him in the room with a safety gate so he wouldn’t run out of his bedroom. It took him about 30-45 minutes to finally fall asleep, between getting up and crying at the gate and going back to lay down, he was out for good and napped a good two hours. It seemed too easy and too good to be true. 

 And it was. Bed time was horrible!!

It didn’t help that he had taken a late nap and wasn’t too sleepy by 8pm. So he screamed at the gate off and on for about 2hrs. Finally he fell asleep on the floor!

Throughout the night I had to check on him to make sure he wasn’t on the floor, and I only found him on the floor once, sound asleep at about 3am. He was extra fidgety in bed and I could hear him all night long just kicking in his bed.

As bad as it was, it wasn’t nearly as bad as it could have been and the next night would be better.

 

NOT.

It was worse.

 

He cried more but at least he stayed in his bed most of the time.

But it was - ALL. NIGHT. LONG.

Apparently everyone else slept through it because the girls and the hubby said he did so much better and that he hardly cried… umm, ok were they sleeping in the same house as I was. The kid whined and moaned and cried all night long. At one point he started to cry really loud and I was determined to let him cry it out, I was way too comfy under my blankets and worn out but daddy went to the rescue and brought him to the bed with us. That seems to be the only thing Daddy remembers. He eventually put Ethan back in his bed and woke up whimpering not long after that. Mommy went to the rescue this time and I caressed his little face, within minutes he was out again and he was mainly out for the remainder of the night.

Part of me considered to convert his bed back to a crib, YES, shamelessly that thought crossed my  mind.  Sleep deprivation can cause you to do silly stuff, like giving up. But I didn’t .

Now some of you are probably like “what is wrong with this woman? Why does she insist on her baby sleeping in a toddler bed, why doesn’t she convert it back to a crib or let him sleep with her..?”

 

-Well he cant sleep in his crib forever. My other kids were out of their cribs by this age. No need to baby Ethan a little longer just because he has Down syndrome.  I want him to learn and be independent and be able to fall asleep on his own. Like the big boy that he is.

-And no way am I going to let him sleep with us. Yeah sometimes we let him snuggle inbetween us at night until he falls asleep, but I learned my lesson with my first born and breaking her out of that habit has been one of the worst things I have ever experienced. She cried bloody murder all night long, Lord did she cry. At that time we were living with my inlaws and they even broke the door down to get in the room to “rescue” Gabby… - true story. Ever since then I vowed to never get my kids in the habit of sleeping with us. Andrea was so easy to transition from crib to bed.. to her own room. She is a trooper, she can sleep with no lights on and the door closed and sleep till the cows come home. Gabby on the other hand, still needs a night light and just recently started to close her door.

Those have been my experiences… AND I like having the bed for just me and the hubby. I think it’s healthy for a marriage to be able to spend some cuddle time with just you and your spouse in bed. Without a kid kicking you in the face.

(I am not bashing anyone that decides to co-sleep with their children.. it just didn’t work for us, that’s all.)

LAST night, I was for sure it was going to be another awful night.

It actually turned out to be much better. A whole lot less  crying and if he did cry he would do so from his bed instead of at the gate, although he would go and just stand to see if he could see anyone. Around 9pm I found him snoring and heavily asleep on the floor by the gate. 

But it was a better night.

THANKFULLY.

Proof that this kid is still wired even on little sleep, pictures from Tuesday morning at school:

Climbs into someone's cubby

 Runs away from me:

Down the slide

WHAT are you doing Ethan???

 Oh, he was just KICKING his teacher...

HAHAlarious, Ethan thinks it is

Tries to run over one of the teacher’s assistants…

 

And this was all in about 10 minutes, I don’t have much time to spare in the mornings sinceI have to rush out of there and head to work. He runs on some sort of magical toddler crack.

LAST night, just because he is a silly boy!

wearing daddy's work boots

He makes my heart so happy. My little guy! 

-erika 

Friend's family pics

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I shot my friend's family this weekend (no, not with a gun... a camera) back at the railroad tracks.

(ok, she isnt JUST a friend, she is one of my besties... more like a sister... and she annoys the crap out of me, but i sure do love her!!!!)

I am still working on focal points, and posing. I had so many ideas in my head before the shoot, but once I was there I went blank! Thankfully these guys just went with it and we lots of fun!

The sky was gray and no sun peeked through, I was hoping for some good before the sun sets light.. but all we got was a sad gray sky.

look who wanted to be in the picture.... always wants to be the center of attention!

Beautiful family! This was their first family pictures they've taken since ever having their daughter. I was overjoyed to have had the privileged to photograph them. And thank you guys for the Pappa's BBQ!

-erika

Just Ethan stuff (health update)

   I had mention on my last post that he had a vision test recently. Typically, children with Down syndrome should have their eyes examined yearly or something along those lines… maybe even younger before their first year…. I don’t exactly recall what age it is recommended for their fist exam. 

Yeah, we are bad parents and this was his first ever. We really didn’t have much of a concern when he was younger. I would still recommend you take your baby to get tested just to be safe.

Lately I had noticed that one of his eyes would cross, or at least I thought so. Turns out it’s just the anatomy of his eyes that cause the illusion of a crossed eye and every now and then it does cross because he does have some farsightedness. It is minimal and to be expected for a two year old since they are still growing and their eyes are still learning to focus and adjust. The Dr. said that his nerves looked real healthy as well, that sometimes in people with Ds their nerves don’t appear “normal” but his are really healthy looking.  

The visit was rather long, one of the longest I’ve ever had. Well, we’ve had other rather long appointments such as the Down Syndrome Clinic here at TCH but Ethan was smaller and NOT running away. Ethan was being chased around the room with a little light. Funny, indeed. Tiring, extremely. We had to hold him down a few times as long as he wasn’t squeezing his eyes shut or crying. He did rather well for a 2 year old, but it was a very long appointment and he even wore himself (and me!) out towards the end.  Sadly I had to be back at work that afternoon.

Another routine exam should be our children’s thyroid. I personally believe that many times Dr’s do not catch the issues with thyroids, especially if they are not aware of the guidelines for children with Ds. Anything over 3 on the TSH numbers should require treatment. His last bloodwork did reveal a hypothyroid back in August or September (whenever it was..), but of course pediatric endocrinologist in Houston are limited and we are not being seen until February. It would have been April if we wanted to be seen at TCH (Texas Children’s Hospital) but I cannot put of treatment until then. It is outrages that my son (and others) have to wait so freakin’ long for treatment.

Next month after out appointment, I’ll make sure to fill you all in on the details.

Late last week we noticed Ethan was bumping into walls… BAD. And falling and just being clumsy, then his appetite decreased then came the fever on Sunday, which I didn’t really think much off, but then Monday his fevers weren’t getting any better, so after a Dr’s appt on Tuesday, it was revealed that he had two ear infections.

Phooey.

Back in November his hearing test revealed mild hearing loss in his right ear due to fluid in one ear. He had just gotten over an ear infection then, so that makes it about 3 ear infections in less than a year. And those are the ear infections that we know off. Ethan has a pretty high pain tolerance and he gets warm every now and then and I typically don’t think much of it. I believe that children should be able to fight off low grade fevers on their own and I usually just let him be.  This gets me to thinking how many other ear infections has he had that might not have been as severe or didn’t complain about.

At that last appt I was determined to push adenoid removal due to his constant nasal congestion and all the snot causing infections in his nose. I wasn’t expecting to be told that he had mild hearing loss. Of course, I went in there unprepared and  I wish I had known what I was facing before going in there. If I could have done it all differently I would have pushed tubes in his ears.

But I didn’t. I fell victim (no, not really) to all the stuff the Dr had to say and it made it sense. And in all honesty it does make sense. 

The ENT did not want to do tubes because he felt it was unnecessary to go through surgery for just ONE ear. And I totally get it. He also did not believe adenoid removal was necessary at the time either and he put Ethan on Nasonex and Singular. Which both have been working great but as soon as we miss a few doses in a row (because I think Ethan is improving) the congestion comes back. The Dr. also believed that if we could control his nasal congestion it could possibly improve the fluid behind his ear and tubes would not be necessary. I totally get what the dr is saying and the risks of surgeries, I know the dr would rather not have to put a small child under because of mild hearing loss in ONE ear. I get it. Really I do.

BUT my Ethan is not like his other two year patients. He needs all the help he can get. ONE good ear is NOT enough for him. He needs both ears more desperately than I need two.

His speech therapist also believes in tubes and she said she has better results in children with tubes.

And I know his speech is being affected. I was trying to get Ethan to say “duck” after his ST had said that he was able to say “duck” when they were reading a book. But instead of saying duck he said “ta” and made the sign for “stop”. The kid is not hearing correctly.

And it happened again just the other day when I was trying to get him to say another word… once again he said “ta” and signed “stop”.

Needless to say, we have an appointment next week where I will be pushing for tubes.

I also noticed at times when we are listening to the radio in the truck, I look back at him and he is just moving his lips. He is trying to sing, but no words are coming out of his mouth (and I really hope we are not dealing with speech apraxia).

Overall I do believe he hears most of what I am saying and understands as well, but there is obviously something there that is delaying the process more.

He has a few words he attempts to say: of course there is “ta” for stop; “tither” for sister; “da” for dad; and “mawmaw” for grandma. Those are really the only ones that are the most understandable. (I’ve mentioned before that around a yr old he was attempting more words than now.) He could very well be trying to say other words but I might not be recognizing them.

 

Speech therapy

We’ve lost our Speech Therapist through ECI (Early Childhood Intervention). Our area only had one ST and it took forever to get on board with her and we seen a lot of improvement with him having ST, sadly though, she is gone. She left ECI to work for the school district. Heartbreaking indeed.

I learned about his mild hearing loss in mid November but didn’t realize how much it impacted him till December, along with finding out our ST was leaving. It all added to my anxiety and breakdown. I am thankful for new days. And recently I received a call from a new ST that has replaced the old ST… I’ll be jumping on that as soon as I remember to call.

Overall the kid is doing real well. Happy and sociable most of the times, his tantrums are horrible tough. Just hoping they don’t last for years the way they did for my middle child, although hers started at 3yrs old. The terrible 3’s.

And even if it seems like a lot of issues or concerns that I have to deal with (in regards to having a child with Ds and his health), his needs are really are not outrages or unmanageable. I still think I am pretty lucky and I’ll take his current issues over any others, that is for sure. 

maybe it's just in his blood to play with guns, he gets it from his daddy.. There are no toy guns at home...

More picture taking practice - Urban Style

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The title sums it up...  urban style photography.

Ethan had a  vision test on Friday morning and I had to get back to work that afternoon so after I dropped him off at Gma's I drove around (she lives in  2nd ward, you Houstonians might know where that is, - Harrisburg area, which apparently is pretty popular amongst photographers...I say that because I seen 2 photographers in that area in two days!   I seen this one old warehouse building that was just amazing, I U-turned and I scoped the area out, THEN i seen another photographer setting up.... DANG IT!!!! Oh well, is a perfect location for pics. So whoever you are Mrs Photographer, I am not "stealing" your ideas or anything like that.  I had agreed to do my friend's family portraits next weekend and I have been looking for a spot and she also thinks this would be a neat place. I took the kids Saturday morning for some practice shots.

We got there when the sun was a bit harsh and there was no shade and I didnt have any reflectors, but it was fun and I was overall pleased.

 

OH Look !! It's Me!!!

It was honestly so much fun. This really is something I can get caught up in doing and loss track of time. Although having Ethan with us really slowed us down. I had him strapped down in his buggy but he whined the whole time and when I did take him out he kept falling on the rocks and I was paranoid about what there could be in between the rocks. And Andrea was a little spooked, she said the area was creepy and she wasn't cooperating much, which I do not understand, the kid sits down to watch The Walking Dead with me, I guess the WD is not as bad as reality and actual spookiness.

Cant wait for next weekend when I shoot my friend's family in better light -so anxious!

-erika