6/9/2011 182 Days Old

On the 182nd day in the life of the most beautiful girl in the history of the world the morning began peacefully. I woke up before Erin left for work this morning. Maya stayed asleep for a little longer. We stuck with our summer tradition of watching the Daily Show at 7:00 in the morning. Then we watched a movie, and Maya did her exercises.

Early this afternoon David came by to see Maya and to bring me my new guitar. We sat with Maya and played all afternoon. I think Maya likes the sound of the new guitar. That must be why I bought it. Yeah thats the ticket. It for Maya.

This evening after  Erin got home from work I got us some take out. Both Erin and Maya seemed to be tired tonight. They spent the last hour or so of our night asleep on the couch. Erin was reclined next to Maya who was in her boppie. At one point Maya started to wake up a little and immediately went for her cannula. I said something to Erin and she woke up enough to stop the impending cannula removal. From that point on Erin held Maya’s hand. They must have laid there asleep for almost an hour hand in hand. I tried to get a picture on my cell phone, but Erin outsmarted me. She had set the boppie right on top of my phone. There is no photographic evidence. Erin is pleased.

6/10/2011 183 Days Old

On the 183rd day in the life of the most beautiful girl in the history of the world the morning began peacefully. I was able to go back to sleep after Maya’s 5:30 feeding, and we were all able to sleep in a little bit. We spent our morning being lazy.

Around noon Grandma Kathy came by with lunch. After which she got to get some Maya snuggle time while me and Erin got some projects done. Maya also had a visit from her nurse this afternoon. Her status has not changed. She just keeps going along. Maya decided today that she didn’t feel like sleeping. She was awake almost all day. She did take two one hour naps, but that was it. I hope that she sleeps tonight.

This evening Erin went out for a girls night. Grandpa Bob came over and brought some sushi. We hung out with Maya while the girls went to the movies. After Erin and Grandma Chris got home, Grandma got a little Maya cuddle time. Maya is still awake now. Maybe her 11:00 feeding will put her to sleep. If not it will be a long night.

6/12/2011 185 Days Old

On the 185th day in the life of the most beautiful girl in the history of the world the morning began peacefully. At least for me it did. After I woke up I discovered that Erin had been up at 9:00. Maya had been up twice during the night. Once she popped out her cannula and was very upset by the time she realized that something was wrong and woke Erin up. She still needs morphine from time to time and last night was one of those times. It does help her breathe easier, and it comforts her when she is upset.

Today Maya decided she would have an awake day, and see what she could learn. Grandma Kathy came by to take care of Maya while me and Erin got some work done on the house. She was awake for most of the day. She spent some time cuddled with grandma on the couch. She has really discovered her tongue recently, and she loves to stick it out and blow raspberries. We have been working on getting her more comfortable with tasting things. We have dipped her passifier in milk and popped it in her mouth. She has tasted crackers and cheese. She liked the crackers, but didn’t   care for the cheese. Today she got to taste fritos. She liked those. She doesn’t like to have anything in her mouth, but she will stick her tongue out for a taste, and lick her lips. She also got to taste a banana. She really liked it. As soon as it touched her lips her tongue came about as far out of her mouth as I have ever seen. It was adorable watching her lick her lips for the next few minutes.

This evening Krissie and Travis stopped by to see Maya for a bit. When they stopped by Maya was in her crib for the first time other than to take pictures. We set up Maya’s play mat in the crib while we were cleaning out her closet. It was the longest amount of time she had ever spent in her own crib.  At this point Maya was still awake as she had been for most of the day. Just after she fell into the deepest sleep I have ever seen her in. I hope she stays that way tonight. I love to see her resting so peacefully.

6/13/2011 186 Days Old

On the 186th day in the life of the most beautiful girl in the history of the world the morning began peacefully. We thought instead of a regular update we would do a picture post. A few pictures from Maya’s actual 6 month birthday (…ok it was a day later because she wouldn’t let us put her in the white onesie to take her picture), and a few to show off her awesome head control and tummy time.

Maya is doing well.

6/14/2011 187 Days Old

On the 187th day in the life of the most beautiful girl in the history of the world the morning began peacefully. I woke up before Erin left for work and moved Maya out to the couch. We did some exercises and played around for a bit before Maya fell asleep during her 9:00 feeding. She woke up at about 11:00 and she was not happy. She was really congested, so I got out her suction machine and tried to clear her nose. I only succeeded in making things worse. A little morphine some deep suction, and about an hour and she calmed back down. It was a stressful hour.

Shortly after noon Maya got a visit from her nurse. Her lungs are sounding a little better every week. She stayed calm and awake through the entire visit. Later in the afternoon she also had a visit from her occupational therapist. Maya is doing really well with tummy time and all of her other exercises. We worked on tasting again. She still likes bananas. Her O.T. was very excited with all the progress Maya has made.

Tonight Grandpa Bob and Grandma Chris came by for dinner. We fired up the grill and had an excellent dinner. Maya is cuddled up with grandpa now, and is in and out of sleep. She is a very tired girl after her very busy day.

6/15/2011 188 Days Old

On the 188th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Me and Maya watched the daily show on the couch as we do most mornings. Today Grandma Patti came by to take care of Maya so that I could attempt to accomplish something.

Today was a big day for Maya. We have been working with her on tasting so that hopefully she can build back up her swallowing reflex. This morning we let Maya suck on a frozen banana. She really liked it. She swallowed several times while tasting the banana. If we keep practicing every day eventually she should swallow more natural which will really help her. Right now she just likes to lay face down and drool it all out.

This evening Maya had a first time visitor. Tori came by for diner and met Maya for the first time. She got to see Maya have a frozen banana. After Tori left Maya got a bath, and it was as Erin said ” No time is a good time for bath time.” Maya was a very unhappy girl. Erin got her calmed down and we moved her into the bedroom. Within minutes of resting on Erin’s shoulder Maya was asleep. She only had two very short naps today of about an hour each. Hopefully she will make up for it with a sound sleep tonight.

6/16/2011 189 Days Old

On the 189th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya decided she wanted to be held a few times last night. She would wake up ever few hours and make little noises until she felt the comfort of her mom’s arms. It is great to be wanted, but sleep is nice too.

Today me and Maya had quite a bit of daddy daughter time alone before Krissie came by to help out. Maya continues to amaze us with the things that she is doing and learning. She even rooted this morning before her 9:00 feeding. She started to make little noises and open her mouth and stuck out her tongue until I got her banana ready. She loves to lick and suck on frozen bananas. For a while she even latched onto it like she used to latch on to a bottle. Maya also practiced blowing raspberries. Krissie took a video of the event and posted it on youtube.  http://www.youtube.com/watch?v=6ksvO5zIdtU&feature=player_detailpage Just as always Maya kept the good stuff off camera. She likes to keep her followers wanting more. Either that or she is camera shy.

Tonight Grandma Kathy brought us dinner. Maya was still wanting to be held all evening. She is sleeping on Erin’s shoulder now. Hopefully tonight she will be happy in her bed so that we can enjoy getting some sleep in ours.

6/17/2011 190 Days Old

On the 190th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya decided to sleep in today. She did not fully wake up until 10:00. The extra sleep was much appreciated. Today was a day for just the three of us. Erin had to work for a few hours, but the rest of the day was spent together as a family.

Maya had a visit from her nurse today. Everything is still going well. There is no change in her condition. We continued to work with maya on tasting and sitting up. She is a raspberry veteran now, and likes to show off her new skills. She is also more opinionated and vocal than ever. She lets us know what she thinks often.

This evening Grandpa Bob and Grandma Chris came by to see Maya. B.J. Also came by. We all ate dinner together and then hung out and watch the crossroads guitar festival DVD. Maya got to hear clapton, and Derek Trucks. She rocked out to some Jonny lang, and bobbed her head as BB King belted out the thrill is gone. Now that Maya is making more facial expressions it is fun to watch her listen to music. She rarely has a negative reaction, but when a song with a strong steady beat plays she definitely gets a little happier. We have been watching her facial expressions closely for a while now. We think that she is starting to smile. Which is something that we were told she would most likely never do. But we all know what happens when someone tells Maya that she can’t do something.

6/19/2011 192 Days Old

On the 192nd day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya stayed asleep through most of her 5:30 feeding. She woke up to grouse just a little bit. I held her for a few minutes and was able to get her back to sleep so that I could sleep in.

Since today was father’s day, Erin made me breakfast this morning. We got to spend a relaxing morning at home before loading Maya up in the car and heading to Grandpa Bob and Grandma Chris’s house. Maya did well with the trip. As always we loaded up about everything that Maya could possibly need. Most of it we didn’t use. We did forget the boppie again. It is the thing that we use the most with Maya, and we always seem to forget it. Other than that we had every thing we needed to spend the day with Erin’s dad.

We are back home safe and sound now. Maya is very tired and is sleeping on Erin. It was a good father’s day. I got to spend plenty of time with my beautiful daughter.

***Erin here,  I just wanted to write a few words about JJ now since it is Father’s day.  I love to see the man I love become a father.  He is an amazing dad. He loves our Maya so much. He loves to do her exercises with her. I think she is as far in her development as she is because of him.  He say it because he gets bored, but I think he knows she can do more so he works with her more.  He is protective of her too.  I have fell in love with him more over the last 6+ months.

6/20/2011 193 Days Old

On the 193rd day in the life of the most beautiful girl in the history of the world the morning began peacefully. The overnight however was not so peaceful. Maya was really congested last night. She would go to sleep, but every ten minutes or so she would wake up with a stuffy nose. For most babies that would be fine they would breathe through their mouths and sleep all night. The problem that occurs when Maya breathes through her mouth is that she doesn’t get the benefit of her oxygen. She spent most of the night breathing very hard to keep up. When she gets in that state her face loses color and her lips turn a bit blue. At 2:00 she was struggling so bad that we decided to suction her nose. The regular suction couldn’t clear any thing out, so we had to go to the deep suction. To get her clear we had to insert a catheter up her nose and down her throat and the apply suction as we pull out the catheter. Even after all that Maya still had trouble breathing. After she got calmed down from the event her breathing eased and she slept well.

Today was quite the opposite of last night. Maya was awake for much of the day, and her cheeks were nice and rosy. We got to do her exercises, and hang out on the couch. This evening Grandma Kathy came by for dinner and after dinner Juliana came by. Maya was a happy cuddly baby tonight. She likes to sleep with her check smashed into the chest of whoever is holding her. Her and Erin make a cute pair nestled into the couch. We are about to suction Maya’s nose again in hopes that we wont have to later tonight. Hopefully the suction will make things easy on her and we  can catch up on our sleep.