Wednesday, August 17, 2011

Six Month Review

I met with his therapists today to revise his therapy plans as it has been six months. I can't believe it has already been six months! The first steps program has been so wonderful for us! Not only do we love our therapists but as a mom to have the therapy come to the house is amazing. We looked back at his previous goals and were able to check so many off the list. It is so easy to get focused on the day to day that we forget to look at how far we have come. In all honesty the last two months he really has stepped up his progress. I was also very thankful to revamp the new goals as we now face many different obstacles.

Our main issue right now is the major lack of sleep. This silly guy can't seem to fall asleep before 11:30 at night, is up throughout the night in our room, and is up for the day between 5 and 6, often with no daytime nap. The only way he seems to be able to fall asleep is burning the energy until he literally collapses in my arms asleep. Our sleep schedule is exhausting to me, so I can't imagine what it does to him. No wonder his behavioral problems have increased. We start the bedtime process around 8 and it is a full attention all hands on deck assignment until he is crashed, close to midnight. From weighted blankets, to massage, to singing, to rocking, you name it, we've tried it. We've even had Frank sleeping in the room with him, night lights, etc. He eventually squeezes into a space that is about 5 inches wide to sleep face down on the hard wood floor. He will move any pillow or blanket. Sometimes he sleeps upside down on his head with his bottom up in the air. Sometimes he falls asleep sitting up right in the corner. It is bizarre!

It is our ongoing prayer request that he could just fall asleep on his own at a normal bedtime and wake up without the screaming. That is our other main problem right now. He can't transition from sleep to wake without a good hour long wailing session. Usually it involves a lot of other deep pressure activities, like ramming his head into my chest. During which he lacks ability to think clearly at all. He won't let me touch him, won't answer questions, just screams and cries. This happens morning, afternoon, and sometimes at night.

He has actually made some major improvements in his vocalizing! We have increased our sounds and although they aren't exactly accurate he is making major progress. In his own way he is trying to say juice, baba (for milk), no, yes, bubble, ice, yellow (super random), boo (blue), mom, dad, and sis. The colors, bubble, and ice are only spoken upon request. But he is initiating the others. Which is a major major accomplishment for him. There may be a couple of others I'm not thinking of, they are just not clear to the average listener. So we are now going to start working on more vowels and more consonants as well as initiating sound without being asked. His time with first steps will end when he turns 3 in November, which will be so sad! It really has been so amazing and I feel like his speech therapist has become a part of the family. She has really gone above and beyond to not only help Cruz but help me switch over to gluten free. I couldn't have asked for a better match. She is truly an answer to our prayers. So, we have some lofty new goals to work on the next few months. Some of which include teaching him not to lick things in public  (yes!).  Please keep us in your prayers as we are seeing them answered, slowly but surely!

Looking back through pictures 6 months ago, there are not very many differences. The kids look about the same and most of the pictures include Cruz in some weird position for deep pressure. I tried to post some normal looking pics below. On the surface level, there aren't vast differences. Underneath, there are some major changes taking place.
Instead of posting a bunch of side by side pictures, we will leave you with some fun summer pictures of Cruz and his best friend Frank, just keep us in your prayers.

Thursday, August 4, 2011

The Fair

After an entire afternoon at the swimming pool with cousins, the whole family was wiped out, cranky, and couldn't fall asleep for nap time. Mother nature intervened and provided a fifteen minute rainstorm that brought in some much needed cloud cover. Mimi and Papa were babysitting my 2 nephews and niece and we were trying to squeeze every ounce of family fun and togetherness into a 48 hour period. The sweltering heat had deterred most of possible plans together, until that shower drifted through. The phone rang and I thought my mother was kidding at first when she suggested they wanted to go to the fair. "Really? Dad wants to go the fair with all five grandkids in this heat and humidity?" I was shocked. "If we are ever going to go, this is the time to do it," dad said. I agreed and began trying to get diaper bags ready as quick as possible for our spontaneous excursion. If it had been in the morning I wouldn't have worried about the kids. Since it was 5pm, I knew we were starting on shaky ground. 80% of our meltdowns and screaming fits happen between 2pm and 6pm. Nevertheless we loaded up the car and headed out hoping that the cloud cover would hold the temperature down. With an arsenal of sippy cups, hand sanitizer, and extra golf balls to carry (it's his latest must have) we arrived and headed straight for the animals. 
 Cruz was so excited. I am not going to lie, I personally love seeing all of the animals. (Maybe its because I have this secret dream to own a farm and all work the land together) We were all impressed by the massive bulls. Both of my kids love animals. Wren was an infant last summer so she was especially thrilled to see real live animals.
 We walked the rows, stepped over their poop, nodded to each of the farmers...
 Saw a baby drinking milk from its mommy. A small dog came near and in true maternal instinct, the mother plowed into it with her head as a warning to stay away. She looked terribly annoyed with the people standing around watching, and her utters looked like they were going to burst as that baby gnawed away. I wanted to just give that mother cow a hug and tell her I totally understood.
 Cruz and his cousin Henley have a special bond.
This is our niece Rivington Rose, she is only 8 weeks younger than Wren. I just know that she and Wren are going to be the dynamic duo of trouble! Not like 'bad girl' trouble, more like 'convince PaPa to buy us' stuff trouble!
 The kids loved getting to pet all of the different animals. I'm pretty sure that they thought the sheep were Franklin, but could you blame them? They feel the same.

 Cruz was all smiles and giggles and none of the kids seemed to mind the thick humidity.

 Rogan and Wren have a special bond as well. He thinks it is so funny to ask her to point to things or to repeat after him.

We had a nutritious corn dog and lemonade for dinner, don't tell our naturopathic!
 The kids got to meet firemen and take a look around the firetruck. Cruz has been carrying around a small firetruck for about two weeks. Just to clarify any confusion, he has been carrying 3 golfballs, a rubber bouncy ball, firetruck, and a rooster everywhere we go. In the car, to bed, outside, inside, in the tubby. I'm not sure if any of you have had the opportunity to look for a rooster that is the size of a quarter, but it sure makes for a fun scavenger hunt about five times a day, especially when its accompanied with tears and panicked whining. We need to get him some kind of satchel to carry it all around in. In the middle of the night we can hear the golfball hit the hard wood and then some crying until it is recovered. So, he was very excited to get to see the life size firetruck.
 He sat up in the driver seat and they all got stickers.

 Cruz's firetruck is in hand.
 Daddy and Cruz did some really lame rides that didn't have much of a thrill factor.
So, we let him try one on his own. He was  a little confused at first. By his third time around the loop he was fine.
 Then the big boys joined him. They all rode it twice together. Cruz was laughing and clapping the entire time.

 They rode a couple more and decided to call it a night since the girls were getting fussy.

We had to stop on the way out for a pony ride. Cruz was so excited. I have been thinking about starting him on some hippotherapy so this was a good test for me to see how he would respond. He loved it.
Despite the sketchy crowd that really started to show up as it got dark, we had a lot of fun. Poor Wren wanted desperately to ride everything but she was too small. Next year she'll get to do it all.

The fifteen minutes of thunder and rain opened up a window of opportunity. We would have just stayed home and played that evening, but the rain ushered us into complete spontaneity. So, here's to embracing last minute opportunities, taking chances, and looking for the blessing that comes after the storm. There is always a blessing on the other side.

Tuesday, August 2, 2011

The Desert Rose

Isaiah 43:19
See! I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the desert and streams in the wasteland.

There are multiple flowers that are able to somehow grow and bloom in extreme conditions. Whether it be extreme heat and dryness or high altitude. There is something in their DNA that separates them from the rest. Given any normal set of conditions they would not have the same blossom or grow to the magnitude that they are capable of. The unbearable oppressive heat the last few weeks has reeked havoc on our yard and plants. To the naked eye, they died. In fact, we have a small dogwood that was transplanted to our yard a year ago and has only had brown leaves all summer. My mother even mentioned to me a few weeks ago that I ought to just get rid of it and plant something else. Which I totally agreed with but just haven't had the time or energy to do it. I hesitated on my potted plants about whether to continue watering them or just throw in the towel. With sweat already beading my face at 7:30 am I have watered those plants just in case. Yesterday we had another sprinkler day and I made sure to give them all a good soaking around 5 pm. Everything is brown and crispy and seemingly shows no sign of growth. Then suddenly, out of nowhere they each sprouted new buds. Even the dogwood that has been dead for 3 months.
 It came out of the clear blue, overnight, a burst of new life...

 New growth where there seemed to be nothing...

 Still needs a lot of growth and healing, but showing signs of improvement...

And such is the story with Cruz. Months of therapy and suddenly this week there was a tiny new bud that burst forth to show us growth. For the first time in his short life he initiated a word without me asking him to repeat a sound after me. 'BaBa' he said sheepishly with eyebrows raised hoping I would know what he was wanting. I knew immediately he was wanting a sippy cup of milk mainly because I could set my clocks by his routine. I repeated it back to him, 'BaBa?' I signed milk at the same time. He grunted and then said it again with much force this time. "BABA" as he signed with his hands, like a proud peacock strutting his feathers. I squeeled with delight, literally it was a very high pitched 'eee' sound, and hugged him tight. His eyes lit up and he clapped his hands. I told him I was so proud of him and he beamed as if he had just won the spelling bee. Since then he has asked for it every time he has wanted it and hasn't signed milk to me again. We have also been working on a few new words this week and they are becoming much clearer. 'Up' is one that he is really starting to get good. I know that we still have so much work to do but this week I am choosing to be thankful for the progress in his speech. His sensory and sleeping  issues have actually been worse this week but I am praising the Lord for seeing this new growth. If there is one thing we have learned over and over again it is that God is working on our behalf even when we can't see it. In the midst of a dry desert, I see a small bud that is beginning to bloom. He has special DNA just like those unique desert flowers that bloom under different conditions.