7 months and milestones reached!

When other heart moms told me life was so much better post Glenn, I didn't really know what they meant, but I do now. Alexander has been changing everyday and catching up quickly with some of his milestones. On September 11th, our little man turned 7 months and since then he has learned to stick his feet in his mouth, stick his tongue out at you, has begun laugh more and has learned to roll over!











In addition to our big boy with his skills emerging, he is also sleeping in his own bed now and beginning to sooth himself to sleep. When he doesn't want to sleep, he wants to play, play, play!






Now that there is no longer a sternum precaution, physical therapy has really started with him. His therapist comes twice a week, making him sit and lay in positions to strengthen his upper body. He does not like theses exercises and gets so mad he turns blue. Not to worry though, I'm there observing and checking to make sure Alexander's pulse oximeter gives a good reading during the session. Luckily, he doesn't stay the lovely shade of blue long and with every session he is getting stronger. By 8 months, I'm thinking he will be sitting independently and hopefully rolling from stomach to back because right now he gets stuck when he rolls from back to stomach.

Alexander's many appointments have finally slowed down so we can finally spend more time at home instead of go go go. We are now down to therapy coming to the house 3 times a week (early interventionist comes once and PT comes twice) and  weekly visits visits to Cranial Technology to see how Alexander's Doc Band is fitting. We've been told that Alexander's head is growing fast and he should only need to wear it for 3 more weeks! :)

On to the slightly disappointing news. After his cardioalogy appointment two weeks ago, Alexander is still on his two medications: Sildenfil and Lasik, as his chest X-ray showed some haze. We also had his swallow study this week and he unfortunately did not pass because he aspirated twice. :( This makes me very heart broken as I am no longer nursing him. He will still be receiving breast milk but it will be thickened with rice cereal for another 3 months and then he will be reassessed. I'm not sure if I mentioned before but the thickening of the breast milk is a pain in the butt!! He gets 1.5 teaspoons for grinded rice cereal for every 60 cc's, in which he has to finish in 10 minutes because the enzyme in the breastmilk breaks down the cereal. On top of making sure Alexander finishes the bottle in time, we also have to be cautious and look for any signs of aspiration-which is much more difficult than you would think. We have 3 more months of that-blah! However, we have started solids this week! :)

A few weeks ago, Alexander's grandma Cindy had a blood drive in honor of Alexander and all the rest of the children at CHLA. It was a such a good turn out!

Lastly, Alexander's teething seems to be effecting his his eating, which he is slowing down his weight a bit. He currently weighs 13 pounds 6 oz. and we are hoping feeding him solids will help with his weight gain. He has an appointment with his GI specialist in the next couple weeks and I'm hoping he doesn't want to have the discussion of putting in a G-tube because of his weight. That is not a conversation I want to have or something I want to do. I feel like I've worked so hard to get him to feed "normally" and he's made such good progress with the changes, that I don't want to back track.  People tell me-"Don't worry" or "You worry to much", but I feel that as a mother, your job is to worry and being a mother to a cardiac baby, where anything could go wrong, and having to stay on top of so many things (i.e. heart rate, breathing, color change, dehydration, weight gain, etc), that it is hard not too! I keep trying to stay positive with all of the milestones he has begun to meet and not let the things that he isn't meeting bring me down or worry me.

Thank you for following us on our superman journey! Prayers and positive thoughts are always needed for Alexander to continue to gain weight, get stronger every day, and continue to to meet all of his milestones!

The adventures

Oh the adventures we went on 2 weeks ago! Two Thursday's ago, I took Alexander out into the community. First stop was USPS and then to Macy's. I parked and went into Macy's on the second floor, looked around for the home department and discovered it was on the first floor..crap! So once I found the elevator, I went to the home department and of course after 15 minutes of help, I couldn't get any of the bridal registry items for a friend because they didn't have it. So we headed home.
On Friday, Grandma Jeannie and I loaded up the car with lots of stuff for our weekend in Escondido. Our plan was to head that way after Alexander's visit in Pasadena to get his Doc Band. Well, 10 minutes on the road, as I was getting onto the 210, I blew a tire! I slowly got off the freeway, parked under an over pass and called AAA. When they arrived, the guy told me that he could put a patch on my tire, not worry about the doughnut I had and follow him 1.5 miles to a tire shop to get the tire fixed. I got on the freeway, drove 500 feet, and poof! No more air in my tire. I pulled back over, the AAA guy put more air in my tire and said "GO!". So I went another 500 feet and poof! flat again and now my car was smelling like burnt rubber. So, the AAA guy then took all of stuff out of the car, got the doughnut out and put it on. We then got to the tire shop, where we were told that the tire couldn't be replaced and it would be 45 minutes to get a new tire on. Well, it was 90 degrees at 12 pm, the place had no A/C and Alex needed to be fed. So I said, thanks but no thanks and drove to another tire shop, that had A/C. While we waited 45 minutes at the next tire shop, I changed  Alexander's diaper and fed him. Here I was, hadn't exposed Alex to many germs, and I had him in a tire shop! Needless to say we didn't get Alexander's Doc Band and the appointment was rescheduled for Monday morning.

The rest of the weekend went well! Alexander seemed to enjoy being out of the house and in a new environment (enjoying all of the ladies at the bridal shower). Since Wes wasn't on our trip, Auntie Kasey helped me out with the 2 am feedings (it makes it difficult to pump and feed that early in the morning).

We came home on Sunday and stopped in Moreno Valley at a Starbucks to feed Alexander and change him (I thought there would be a changing table in the women's restroom-no such luck!). While we were in Starbucks, Grandma Jeannie volunteered to feed Alexander. While she was feeding him, he preceded to poop and poop up his back and out the side of his diaper onto his Grandma.

Since there was no changing table in the bathroom, I took Alex out to my car fully loaded with CRAP, in the 90-100 degree heat and changed his diaper on the passenger seat. Thank goodness he wasn't wearing his helmet at the time-that would of made him sweat more and much more time consuming changing his poopy diaper and clothes! Once he was changed, I put him in the car seat and we left. 30 minutes from home, Alexander decided he was overly tired and had a crying fit, to where his lips started to turn blue. Grandma Jeannie was driving while Auntie Kasey was following us. We got off the freeway so that I could figure out what was wrong. As we were getting off, he quieted his cry and calmed down. I then took over the drive, while Grandma Jeannie went with Auntie Kasey. He soon passed out in the car and slept the rest of the way home-thank goodness!

Since then things have been busy with multiple trips to Pasadena to make sure his Doc Band was fitting right and now that it is, we go once a week for a quick 15 minute trip. Alexander's cardiology visit was last week too. His echo looked good and his next appointment is in 2 weeks to see his electrophysiologist (pacemaker doctor) and his cardiologist. They will do an X-ray then to see if we can stop the lasik and be down to 1 medication (His Sildenifil).

Great Grandparents helping with medicine!

As for the feeding, I haven't nursed Alex since last week either and have continued to thicken his breast milk with rice cereal. His cardiologist scared me by stating that if Alex's lungs were to be compromised  he wouldn't be a good candidate for the Fontan! Therefore, I'm not taking any chances! So we continue to feed by bottle until his swallow study on September 24th. We then can reevaluate the feeding issues-I'm ready for September 24th to be here! Sleeping during the night has been better! Now that Alex is gaining weight (currently weighs 12 lbs 10 oz) we don't have to wake him every 3-4 hours! He still gets his Sildenefil  at 2 am, so his last feeding is around 8 pm, then goes to sleep until 2! Giving Wes and I a couple more hours of sleep.
Alexander's great Aunt April came out to visit and Alexander has enjoyed her company. He also likes it when he gets to see his great grandparents!

For the past 7 weeks, Alex has been on sternum precaution (no tummy time or picking up under the arms).  We have one more week to go and then we can lift under the arms and start tummy time again, which his PT is looking forward too! I can't wait  and neither can Alex because he seems to be ready to move! Still no tooth but my my we are close! Alexander is a drool face and crabby butt!

Hopefully the next post will be up next week, as our superman will be done with sternum precaution and will  be 7 months old! Thanks for following our superman on his journey! 

Finally a visit to Anacapa Brewery! :)