(from ending his hospital stay ..to.. Grandma & Grandpa B's visit)
April 25, 2008
Anthony's first day home after over a month (3/18 to 4/24) in the hospital. It is soooo nice to not have to drive in to UCSF and spend another day hanging out within 15 feet of a big metal crib with beeping medical equipment strewn about....and bad food. Instead, we're hanging at home, enjoying our own cooking, napping in one room, playing in another, strolling in the back yard and performing medical stuff in a sterile location of our own choosing. Daddy has administered the last three IV antibiotics and today was Mommy's turn to learn. Administering meds to your child three times a day via an IV line is a little nerve racking. So, Anthony's daily regimen so far is: three IV med dosages per day, three oral doses per day, two leg dressing changes per day, one chest dressing per day, and one nasty tasting vitamin dose per day. Toss in feeding time, diaper changes and overall fun time and you can see a very full not so normal day. .......BUT.....he's home...safe and sound. When not dealing with meds or feeding Anthony spent most of the day playing with all his toys that didn't make it to the hospital. We also brought him outside for some sunshine for a bit. He enjoyed the fresh air. Anthony has lost a lot more of his muscle tone and control than we originally thought. Pre-surgery he used to stand quite a bit. He would always want to force himself into a standing position. Now, his legs are a bit weaker and wobbly, same for his sitting skills. We were given some instruction on how to get him back on track, so we're not that worried about it. As far as Anthony is concerned he's all smiles and laughs when he's being helped to stand. You can tell he remembers what it was like and that he's into standing again. So, we believe he'll be back to normal fairly quick. Both Mommy and Daddy have noticed that Anthony does seem a bit more smiley and laughy since coming home. We're glad that he feels safer. Tomorrow Grandma P shows up for a couple days. Grandpa A also comes over tomorrow after his time off and a bit of his own cold. So today was for relaxing, tomorrow is for visitors. Again, thank you to everyone for sending some really nice emails welcoming Anthony back home. We appreciate all the nice thoughts. Everyone is asking what help they can be. We really appreciate all the help we can get, but truth is we're living some pretty detailed stuff. House work and things like that will simply get done around Anthony's needs and as we develop a routine. It's been really difficult to do any activity that is scheduled outside of Anthony's needs, so we do each day by ear.
Other good news today is that Anthony's Grandpa B (Poppies) is now home with his own remarkable healing story. His throat cancer is near gone and remaining treatments will take care of the rest. He's looking good. Next is to work on getting Poppies and Glamma out here to see Anthony for their first time.
Here's some pics for the day.
April 26, 2008
A full two days. Anthony has been home for two full days now. He's most certainly happier than in the hospital. We're continuing to give him his meds and perform the needed physical therapy on him. Today Grandpa A came over to watch him get his meds, and Grandma and Grandpa B supervised via video phone from NY. Other than that it's been a very uneventful day. Some laundry got done. Dinner will be made soon. And we even made some pureed carrots for Anthony to have later tonight. Technically this is our first real down-day in over a month. We took Anthony on a little walk around the neighborhood today for all of 10 minutes. It felt good to get some fresh air and sunshine. Anthony spent the whole time looking around as if it was his first time. Eventually, he'll get used to his home again. The hospital social workers mentioned that it takes a baby Anthony's age about 72 hours or so to acclimate to any new environment. It's also very hot today and Anthony hasn't experienced this kind of heat yet in his life being born in November and living in the hospital for the past month. So........, you can imagine the slow, quiet, peaceful day around here. Good for the nerves. Here's some pics.
April 28, 2008
Another day and a little more healing. Anthony had a visit to the UCSF today to see his RN. He got all the rest of his chest stitches removed, while Daddy and Mommy got new dressing change instructions and some supplies. Anthony was given a good bill of health for today for his wounds, his looks and the pick-line in his arm. We'll be meeting again with UCSF next week for another check up. By then he may not need any more wound dressings. Later this week we meet with the home care nurse, the cardiologist and pediatrician. Walgreens wound up giving us less Heparin dosages, than antibiotic dosages. (They need to be one for one.) We have one more dose of Heparin left for Anthony's next IV session, which effectively means only one more dose of antibiotic. We saw this potential and called Walgreens over the weekend to get ahead of the problem, but were told to "wait till Monday". On Monday they admitted to not giving us matching supplies, but then investigated as to why we ran out so fast of our current supply. Our situation is simple: we are not professionals at giving medications. We can not, and should not, be treated as professionals who would make less mistakes and use less of all supplies during any one medication administration. We're getting better at it, but Walgreens needs to be more understanding. Walgreens said they would get us our needed Heparin before Anthony's 3pm dosage. .....it's 2:30pm now.....and they haven't shown yet. We only have this dose left. Again, we'll watch this relationship with Walgreens as we go. ........Grandma P arrived yesterday, and we all went on a long walk up the hill from the house. First time for the Amato's in a very long time. It's been four days since Anthony came home and we're already building up some hefty bio waste......non-recyclable bio waste. I'm waiting for one full week to take a picture and show you all. Until then, here's some pics from yesterday. (BTW...we called 2 hours ago to complain. It's 4pm now and Walgreens still has not shown up. We're calling again.
May 2, 2008
Yeah, I know, it's been a while. We've just been takin' a break. So...this heparin thing...I was listening to the cspan hearings on it. The line of questioning wanted to know why two plants making the same product under one company can be so different in process to cause "problems". Since the plants exist in two different countries the answers were everything but 'the laws are different between the two countries'. It ended with blame on other suppliers. There are many cases where a market should not be trusted to self regulation. Making products that are injectable to the human body seems like a good candidate for regulation. While the FDA has done a fine job in regulating this market on many occasions, allowing substandard manufacturing to be introduced into American products no matter where it occurs is a misjudgment of life threatening proportions. Preventative policy is not a very popular subject lately, but when your child is at stake, the obviousness of an issue becomes clear, while the realization of the reality becomes scary. .......Walgreens showed up the other day with 10 minutes to spare with the (hopefully) ok Heparin. Two days later we got even more supplies delivered. In the meantime the home nurse showed up to change Anthony's external IV connectors and didn't have the right equipment, nor was it delivered the day before. So, at the moment we're working on WHICH home nurse will be here next week and WHAT supplies need to be brought with her/him (bureaucracy nightmare). As of 5/1 Anthony has been home for one full week and he's starting to get used to his home medication routine. The oral antibiotic makes everything red (including his pee and saliva). The other medication is sticky. On a per day basis we are pumping 336ML into our child via his IV line. The situation kinda sucks, but the results are positive. Anthony had a visit to his cardiologist yesterday and was given two thumbs-up. His mitral-regurgitation has diminished via the examination, but a new echocardiogram (which is the best way to tell) is not scheduled for another three weeks. The docs think Anthony (by his numbers) is doing well enough to postpone that scan. His white blood cell count and kidney numbers are down even further into the normal range and his other numbers showing overall system health are also very good. But we won't be popping the champagne cork until after that echo in three weeks, which is also when the antibiotic regime will be complete. ........Waste waste waste.... All the used syringes and other non-recyclable IV equipment are beginning to pile up. Check out the pics for a visual on one weeks worth of junk in the name of health. .........Anthony is slowly getting back to his old self with talking and toy playing. Mommy and Daddy are putting him through his physical therapy motions for standing and sitting. Anthony is gaining leg strength by the day. Grandma P visited for a couple days and helped out around the house and with the shopping. Cousin Kara and Grandpa A showed up for a bit on Thursday morning. It's all in the pics.
May 4, 2008
Nothin' special to report today. Anthony ate, slept, crapped, took his meds, got his dressing changes and had his pick-line connectors updated. Here's some pics as the day progressed.
May 3, 2008
HAPPY BIRTHDAY, ANTHONY! .......six months old today, and how did we celebrate? By changing dressings, giving meds and taking a walk to the neighborhood mini mall. The ice cream shop was giving away free ice cream, so Mommy and Daddy indulged themselves while singing Happy Birthday to our little one. Meanwhile, except for during the walk, Anthony was Mr. Grumbleness today. He didn't sleep good last night and hasn't wanted to take naps much today. He's way over tired. We hope tonight will be long and sleepy for him. He's in his room right now (8pm) with Mommy giving his I'm-tired-and-crabby cry. Anthony continues to get better. His chest wound is an eight inch scar, but only one inch has any scabbing left that still needs dressing changes twice a day. We expect that Anthony won't need any chest bandage by the end of next week. The hospital kept a bigger bandage on the wound while he was there as over-kill to make double sure of no new infection and ensure faster healing. His leg bruising is about the same. Only three dime sized dots remain, and those are near healed enough to not need the special medication that we've been using. Anthony has an examination at UCSF next Wednesday to determine dressing issues and talk about other details. Tomorrow, Sunday, Anthony's home nurse is coming over to change his pick-line dressing as she didn't have the right equipment last time, and the dressing she did do is starting to come apart. (oy!) So next week is looking like this: Sunday- home nurse visit for Anthony. Monday- doctors visit for Daddy's back, Tuesday- pediatrician visit for Anthony, Wednesday- UCSF visit for Anthony. ......It is so nice to have Anthony home, but now we're looking at the final finish line. Two weeks from today (supposedly) Anthony will no longer need the antibiotics, wound dressings, nor will he need to be handled in special ways to protect his chest plate while it heals. Two weeks from today (hopefully) it will all be over. We'll still need to go for checkups from time to time, but the days of true worry and special handling will be over. We've been keeping Anthony at home in doors (mostly) in order to avoid crowds and potential contamination from anything. It may be overkill, but it's worth it to ensure Anthony's health. In the process Mommy and Daddy are going a little stir crazy. We're home, but we're also home...ya know? We want so much to take Anthony to other places. We want to take him to places where there are other people and/or babies. In the meantime, we spend the time puttering around the house and playing with Anthony. :) But there are enough errands building up that each of us will share to get us out of the house, but the other will need to stay home with the baby. Every day Anthony gets better and better. We really don't take enough pictures (especially when he's truly in his happiest of moods). You'll are missing out on his best moments....and of course...his worst. Here's some pics for today.
May 7, 2008
Anthony had two doctor's visits this week and a blood draw this past Sunday. Yesterday he saw his pediatrician for the first time since that fateful afternoon on 3/26. He gave Anthony an excellent score card. The doc was impressed with Anthony's progress and Mommy and Daddy's efforts to keep Anthony on the road to health. We were given permission to start feeding Anthony baby cereal a bit ahead of time. One benefit of this new item would be to make his stool a little less liquid (antibiotics create diarrhea). Anthony then saw his nurse practitioner (NP) at UCSF this morning and also got a clean bill of health (as did Mommy and Daddy again). The NP ripped off the remaining half inch scab on his chest scar, and gave us permission to use a band-aid just for that one spot and then only for maybe another week. The NP also looked at his leg and found only one bruise that still needs a band-aid of some sort, but only for the next two days. This all means that we're about two weeks away from a full-on full-fledged water-splashing....bath!!! It will be the first time in over a month. The blood draw from Sunday produced the following numbers: WBC=8.9, BUN=5, Creatin=0.26, electrolytes are fine. All the numbers are within normal ranges and movements. The Infectious Disease docs site those numbers as reason to REDUCE Anthony's antibiotics regime...but just a little. He will know take the oral rephampin only twice a day and the IV drugs will stay three times a day. This will make it a lot easier for us to start working on Anthony's sleep schedule as the IV drugs can be done in his sleep while the rephampin can be done while he's awake. Some of you have asked questions about how Anthony's scars are doing. We decided to post some shots for the curious to see in today's photos. We also posted a shot of his pick-line and the typical connectors used by the syringes. Eventually we want to post shots of him doing things and wearing different outfits. It's hard to do that now, because of his injuries and how we have to handle him. He's being allowed to do minimal tummy time. We won't be able to lift him from under the arms for another few weeks, and even then we need to take it easy and let him tell us how it feels a little at a time. So, things are starting to go well. It's a lot of work for the three of us. Anthony has to endure every procedure. Fortunately for him the bandage changing episodes have been cut more than half. In about ten days the IV antibiotics will end and the pick line will be removed. That wound will only have a band-aid for a couple days.....and then its bath time!! Again, I'd like to thank all of you for sending some great gifts. The "How to be Superhero" book sent from my friend Ed is priceless...and useful (wink). Mike, Lori and Arielle sent some great outfits. For now were working on his easy summer attire: wrap around t-shirts and diapers. Daddy found some cool gym shorts to give him a better look. And here's what he thinks of shoes that are easy to pull off. Anthony got to sit on the grass today (sorry, no pictures.) He really likes being outside. Also, we'd like to acknowledge that Anthony's Grandpa B (Poppies) had a setback in his throat cancer treatment with a broken blood vessel. He's doing ok right now as the docs say he will be fine, but it's another two weeks added on to his healing. Anthony sure knows how Poppies feels. Well....that's it for now. Sometimes photos get posted without any big wording updates, like these. Later.
May 11, 2008 - Mother's Day
Happy Mother's Day!!!!! Unfortunately for all you other Mom's out there you'll have to accept that Anthony's Mom (Angela) gets the grand prize this year for being the Bestestiest Mommy Ever!!!! We celebrated quietly today with bandage changes, medications, a video call to Grandma & Grandpa B, walks in the sunshine, a visit from Grandpa A, cards, flowers and a full Daddy-cooked steak dinner. Angela has shown incredible strength through all of Anthony's trials. Mommy had moments of weakness that even Daddy and Grandpa A admit to, but Mommy held it together for Anthony. It was Angela who forced the doctors to pay attention to Anthony's breathing patterns just before his staph diagnosis. And it was Angela who was there the exact second that Anthony began his code-blue episode. If it wasn't for Mommy's attention and diligence Anthony may be a little worse off today. Instead, we have a healthy happy baby that is just a joy to be with each day. Anthony is a little camera/people shy, so the pics and vids never show just how much he smiles, laughs and talks. Developmentally, Anthony is doing better than we tend to worry about. He is sitting up on his own for an average of 20 seconds or more at a time. He is starting to use his feet to explore and manipulate things. His toy play is becoming more intricate (like operating something after being shown just once). Time for a whole new set of toys. His only set back is in his arm strength relating to rolling over and crawling. His chest wound and healing chest plate still has a few more weeks till full strength. Starting next weekend we can lift him from under the arms, but need to take it slow and easy watching his every reaction. The docs say that specific 'careful' time period will be short as Anthony readjusts to being handled differently and his chest cage gets used to being handled. ......Kind of makes you feel a little nerve racked to think about, huh? Yep, it's been like that for about two months now. We're getting used to it. We have our own adjustment period too as we "try" and relax our guard and let Anthony be a normal baby. It's going to be hard moving to a schedule without timed medications, bandage changes, timed blood draws, nurse shift changes, etc. Honestly, we've only really had Anthony's first month or so without all that other 'medical involvement' and ...stress. This month of May at home with Anthony is our middle ground before day-care and work schedules begin to dictate the timing of things. Wow....what a road to this point. But Anthony's smile and giggles are more than anything we could ask. So......Happy Mommy's Day to my wonderful wife, Angela!!! And Happy Mommy Day to all you other Mommies out there! Here are some pics for today.
May 9, 2008
So.....where's the finish line? Well....not really thee finish line, but where's the line when life can be considered (ahem) ...normal, and all this medical stuff sorta mostly behind us? Answer: That would be just two weeks from today. In that time here's what happens: 1) tomorrow Anthony will no longer have a band-aid or bandage on his leg. 2) one week from today Anthony will no longer have a bandage on his chest. 3) eight days from today Anthony will be done with all antibiotics and will also have the pick-line removed from his arm. 4) two weeks from today Anthony will be allowed to take a full-on bath and Mommy and Daddy will be able to pick him up from under his arms (like a normal baby). At that point life is within the normal range. ......Beyond that point more will happen. Three weeks from today we will have a cardiologist visit and a new echo taken to make sure everything is ok from an internal perspective. Four weeks from today we will have a visit with the pediatrician to talk about Anthony's new vaccine schedule, which had to be delayed due to the antibiotic treatments. At that point life becomes more in the middle range of normal and Anthony could be considered, well.....normal. Anthony is doing well. We need to buy him some new toys as he's getting that curious stage where working with a toy is becoming more fun than just drooling on it. He's talking more and even using his feet to explore things out of reach for his hands. Anthony is allowed to do minimal tummy time, which will ramp up over the next month. He can roll over, but doesn't have the arm strength to move around further. We'll see how that improves over the next few weeks. Anthony had pureed broccoli yesterday for the first time, and he loved it. Today he doesn't like broccoli as much. Go figure....he's a kid. He is laughing and enjoying life. That is so wonderful to see. We spend every waking moment with Anthony. Eventually we will have to teach him to spend time with himself although he will have none of that as of today. We're going to have to work on that as the time for day-care approaches. One quick note about the newest game he is playing with himself: He keeps flipping his bib or his blanket over his face. It's like peek-a-boo with himself - evidently, this provides much mystery and entertainment for him. We caught him the other day doing it while (he thought) no one was watching. We'll take a video soon. :o) Meanwhile, Here's some pics.
May 17, 2008 - Mother's Day
Well....it's midnight on 5/18 and Daddy just finished the last of Anthony's IV antibiotic treatments. 3 hours ago was the last oral med. Wow.....it feels weird to not have to wake up early to administer an IV. But at least this part, this big part, of Anthony's recovery ....is over. Later Sunday afternoon the home nurse will show up to remove the pick-line from his arm. We will also remove the remaining band-aid on Anthony's chest wound. Two days later (on Tuesday), when the pick-line hole is fully healed, we will have a fully functioning baby.....and then it's BATH TIME! Anthony has been doing very well. He had a cardiologist visit Thursday where he got two thumbs up on all counts. His weight is now up to 17lbs 3oz and gaining normally. An echo was done and the microregurgitation in his heart has diminished as expected. The only issue is (once again) his blood pressure coming in just a little high (120/50) for a baby. Anthony has another appointment in two weeks for another check. It is possible at that time that he may be put back on captaprill (high blood pressure med) orally for a while to see how he reacts. That would be a bummer, but at least we'd be able to start treating him as normal in all other cases. Let's hope for the best there. .....Well...guess what? ...Wallgreens screwed up again, twice. Last week they sent us adult concentrations of Heparin for Anthony. It's a good thing the label is colored differently, so we noticed it right away. Wallgreens admits to screwing up. The good news is that we had enough of the baby dosages to last to the end (thanks to Mommy ordering extra a couple weeks ago). The other screw up was Wallgreens not completing their paperwork on time before this weekend. They need to initiate a stop-order with UCSF to pull the line out of his arm this Sunday. No order, then the line would have to stay in until Monday. We are not too happy about that at all. We've made a few phone calls to the appropriate people that are trying to get things straightened out. (oy!) And finally late on Saturday we got word that all is a go for removing that gosh-darned IV from his arm Sunday about noon. It's actually blocking Anthony from fully rolling over. Speaking of which, Anthony has been doing well in catching up on his development. He can sit up on his own now (well...more or less). His leg strength is coming back. But his arm strength is still really low. He used to like pulling himself up, but now does it rarely and slow. It must hurt him to use his chest muscles. We'll take it at his pace. Anthony is talking more now too. Well....sorta talking. It's mixed in today's pics. Sorry for no update lately. ........We've been taking things easy ...sort of. We're having a heat wave that Anthony is simply just not used to. We are looking into installing central air conditioning. For us it's no big deal, but for a baby it's worth the investment. In parallel, Daddy has his own medical problems. All the stress and movements over the past two months have aggravated Daddy's back injury that he received in a car accident in 2006. So Daddy went back to the doc for some pain shots in his spine. Daddy will feel a bit better by the end of the weekend. Mommy has been working from time to time and will also begin to increase work time as June rolls. Day-care here we come. One note: we've got a lot of responses about how smiling and wonderful Anthony looked all through his ordeals. He is one hell of a strong little boy, but for every smile photo while in the hospital it was accompanied with hours of pain sometimes (oftentimes) screaming pain and fear. He has come through with flying colors, and with his smile in place. BUT....he is quite afraid of his cardiologist. I'll post another update after tomorrow. We are so excited to have that IV removed!
May 19, 2008
We've passed from one mind set to another. On the one hand we had five different times per day to administer Anthony's meds. That ended on Sunday when his pick-line was safely (with minimal crying) removed. Now our mind set switches on a dime to monitoring his every action/reaction, performing his physical therapy, and improving his development. .......Anthony's development is doing very well. He's curious and is beginning to operate a toy, although the majority of time it's in his mouth. He's talking more and more with more complex sounds, although the classical baby-babble gets spoken the most. His ability to communicate his needs is also getting more complex, or is that just us learning more of his body language? .......Performing his physical therapy is pretty easy to do. Normal play can easily be used to strengthen his legs (his left leg has atrophied a bit and needs direct attention), strengthening his trunk for sitting (not much of a problem as of late), and strengthening his arms which are going to take the longest as his chest wound is slowing him down. ........The hard part is watching every little tiny possible thing that Anthony does and wondering/worrying what is going on. For example: getting a vaccine can cause (and has caused) a fever. His vaccines need to be started back up at about the exact same time that a fever would show if and only if the antibiotic treatment had failed. So, as parents, we still feel like an open wound and having to be more on guard than normal. Meanwhile, Anthony keeps on laughin' and growing. His pick-line was removed Sunday with minimal crying (almost none and all). Pictures are here. Grandpa A came over to witness the event and witness Mommy and Daddy actually feel the physical effect of an emotional weight lifted from our shoulders (a.k.a. staring off into space in relief). We know that we are certainly part of a very minority set of parents with children that have life threatening illnesses. We were lucky on two counts: Anthony's heart surgery was a success, and his infection was managed well. But there are other families out there going through problems much greater than our own. We thank you all for keeping Anthony in your thoughts throughout his ordeal. Anthony would like everyone to please spend some time thinking nice thoughts for all those other kids and their families. (FYI: While we were in the hospital three other babies around Anthony did not survive their ordeals.) So make sure to smile and think nice thoughts for all the little-ones all over that are going through their own ordeals. ........On the lighter side: here's some pics of Anthony doing his "thing" around the house.
May 24, 2008
It's been one full month since Anthony was released from the hospital for the second time. ....wow...a full month at home. It feels like it's been only days. Mommy and Daddy are still a little shell shocked. Each day Anthony does something that makes us wonder if there's a returning symptom. We also worry about how much we need to watch over him above and beyond normal parenting. But it's very hard to pull back the reigns after two months of daily (sometimes hourly) worry. We're told that this affect could last a bit longer. Meanwhile, ....Anthony is still doing well. His sleep pattern is finally settling down. All the antibiotics and oral meds increased his fluid flow and bowel movements, which certainly affected his disposition and sleep habits. With the meds gone and his body's chemistry returning to normal his habits are also settling into more predictable patterns. Case in point: last night was the first time in over four months that he's slept for 7 hours straight. Usually, he sleeps about 3 to 4 hours at the most at one shot due to having to wake him, or having a heavy pee/poopy diaper, from the meds. We do suspect Anthony may have just finished a growth spurt as (in hind sight) these past symptoms fit better to that explanation. Anthony has being doing well with his standing. Both his legs seem to be of pretty equal strength and getting better. His left ankle is still just a little weak, but we're not as concerned anymore on that issue. His arms however are a bit more of a concern. We practice tummy-time with Anthony about 15 minutes a day. He can pull with his arms (as before). But he's never been good at pushing, much less pushing against the floor to raise his body. This is the skill he needs to work on the most as he's getting a little late in the crawling department. His wounds are a hindrance. This past Tuesday was Anthony's first full bath ever. Prior he was too small, therefore we used a child's tub with a fitted hammock to keep his body just barely in the water. Now.....he's big enough to sit up in the deep part of the tub and splash away. He enjoyed his first full bath experience, but didn't really get into it until the end, and by then it was time to dry off and get warm. But today, well...... just check out the pics to see what fun he had today and the fun he's been having all week.
Here's some news on Grandpa B (Poppies): Poppies has begun to eat normal food and is beginning to swallow without too much issue. He can only get down one small meal before his throat gets too sore, but he's trying to get back to full strength. He feels better and the cancer is gone, but (as I know from my own cancer experience) he's got another five years of check ups before the docs can declare him cured. We know he'll be fine. Poppies, Glamma and TT are all working on trying to get out here to see Anthony for their first time. So far things are looking good for the last week in June, but health and time will tell. Poppies and Glamma have emphatically volunteered to watch Anthony the whole week and give Mommy and Daddy a bit of a break. It will feel nice to have some family around to lean on so we can have a little time to ourselves.
May 28 & 29, 2008
Plenty to say, but no time to write, ok? Anthony doing well, here's some pictures that do tell.
5/29: There was a photo missing in the page accessed from the link above. I corrected the error just tonight. Click here to go directly to it. -joe
May 30, 2008
Here we are again......at another emotional point in the journey. This time it's the intersection of full time work, part time work, day care, and a baby not really on any schedule compatible with the other three issues. Normally, by now a baby would have started to show more solid sleep patterns and would be sleeping more during the night. Anthony's body and mind has been under artificial schedules and chemistry for the past 4 months of his life (that's about two-thirds). It's safe to say that he's...."a little off". We've been playing around with day time feeding and napping schedules in hopes to get Anthony to sleep more through the night. He currently wakes up 3 (sometimes 4) times a night. The last two nights have been a bit harder than normal. Daddy has been working part time and will be full time starting next week. Mommy has been working part time and will continue to add hours each week in June until full time by the end of the month. So...we (Anthony) don't have much time before things need to be very different. If you don't mind, Anthony would like to bang on the keyboard for a second: "B vc vvv v hg,-0 v v n Bm 1qmh.;k;3... ......... ............... ......................./GUJJJJJ,M JKKKKSHHKLK .O.;/OOOOOO OIL\\\\\\\\\\\\\\\\\\\\\\\\\\". .....Anthony had a cardiologist visit yesterday and he got very very good news. His blood pressure has come down enough that the docs are not going to put him back on high blood pressure meds. They also gave us the green light to start using things like jumpers and bjorn-like carriers. Anthony will let us know if he has any chest discomfort from handling him in that way. (we take it easy with him anyway). His next visit to the cardiologist is in 4 months and then a year after that. He'll be seeing his pediatrician more now for normal baby stuff.....like his upcoming vaccine shots. :( .....Anthony's cousins in Delaware sent him a really cool toy that looks like the outside/inside of a house and it talks when you use certain parts. Anthony loves it. (note to self: send thank you card). ......Glamma, Poppies and TT are working on finalizing plans to come out and see Anthony for the first time. Poppies is doing much better and should be back to his old self by the time he goes back to work. He's doing really well. August is looking like the month where things are lining up. We'll see what the airlines have to say about that. In the meantime......more pics.
June 4 to 7, 2008
6/4 in Mommy's words: Anthony is getting bigger and tackling more complex tasks. He is able to rollover on soft surfaces (like the bed) although not yet on firmer surfaces. He is sitting up beautifully and needs very little assistance. Tummy time is met with resistance but he is slowly getting stronger. He will be in daycare more and more. I am letting go of the idea that he will be with me during the day. This has been a difficult concept to embrace but, ...one day at a time, I am going to just do it and go to work like many other moms.
6/7: In the space of three days Anthony has learned to roll over on a flatter surface. He's doing well catching up on his development, but he still doesn't like tummy time and/or pushing his body up off the ground. We think he'll be more of scooter across the floor and not much of a crawler before walking. Mommy got her hair cut today. She had 18" taken off. Daddy didn't want her to cut her long beautiful hair, but he fell in love with her when her hair was much shorter, so it's ok. (She looks as cute as ever even in short hair.) Aunt MaryannZ and Cousin MarkZ came over for a visit today. Anthony hasn't met Aunt Maryann before, so he was a little shy, but not too shy. Anthony enjoyed spending time with them. (oh...and...the bottle in the picture is empty and dry...if you really need to know) This past week was Anthony's first time spending all day with his day care provider. He spent all Thursday and Friday at Mary's place while Mommy went back to work for her first full days since prior to Anthony's birth. It's tough after all that time with the baby, but she is doing well. Mommy will be ramping up slowly adding another full day each week in June. Anthony likes Mary, but he still is getting used to her. Mommy and Daddy are adjusting too. Daddy dropped him off both days and saw Anthony give a look that said, "Please don't leave me." I guess the three of us will be ok. After all we've been through it's hard to feel like things are supposed to be back to normal. So much intense focus for so long on Anthony....it's sometimes tough just to acknowledge the weather outside. We were told before his first surgery that it's more of a trauma for the parents. They were oh so right. Here's some photos to enjoy.
June 3, 2008
Happy Birthday, Anthony! You're 7 months old today. We lit a candle, and he sorta blew it out. Anthony is still doing well. He's sitting up more, making new kinds of sounds, blabbing more and starting to get curious about how things go together. Tummy time is getting better, but that's where he was delayed, so he's just now learning to roll on his back from his tummy, but not visa versa. He's also started pushing his balance limits by shaking his head fast while he sits and laughs when we do it with him. Glamma bought Anthony a fit together alphabet play-mat for xmas. We just set it up and he loves it. We'll probably get another one for our den. Anthony is slowly getting into a regular schedule with feeding and eating, but you all know how that can go. Full day care is just one day away. We've added to Anthony's menu. He's now eating broccoli, carrots, sweat potatoes, cauliflower, zucchini, bananas, and apples. All pureed of course. Last time Anthony was weighed he was 17 pounds 6 ounces. By now he has to be over 18 pounds. We'll weigh him again soon. He's also growing out of his 6 months clothes and is starting to wear stuff for one year olds. Mommy and Daddy are getting more adventuresome with Anthony taking him to the store and on longer walks. This weekend we're going to take a family trip to Costco.....oh joy. Anthony really is becoming all we've wanted. It's really weird to think that just a short time ago he was literally near death, and now......everything is fine. It's really hard to let that thought sink in. We've been on edge since week one. Each day there's one more thing he does that expands his world, eases our thoughts and warms our hearts. Here's some pics.
June 8th to 15th (Father's Day), 2008
Happy Father's Day!!!! .....I'll tell ya plain and simple like: I couldn't have asked for a better family. Angela is a super-wife and super-mom rolled into one. I couldn't have made it through the past few months without her. And Anthony is (objectively) the best son ever. Today was Father's Day and Anthony decided he wanted to smile and laugh more around Daddy. I really appreciated that from him. Best Father's Day gift ever. And Mommy's gift of a new big-ass-grill was certainly something I've been talking about replacing for quite some time, so it's a welcomed gift indeed. Yeah, I know...classic Daddy-Day gift, but I did appreciate it and did have some fun putting it together. Anthony helped too. :) Cousin Melanie came for a visit yesterday. Anthony was his typical shy self, but he warmed up to her soon. It was really nice seeing her. She got to see Anthony eat and make messes. Anthony is doing very well lately. He had a pediatrician appointment last week and got a great report card. His strength is returning. His development is mostly returned. He's a healthy 18 pounds. Starting this weekend Anthony will be eating more food less pureed and more soft and chunky. He had some today and did well as long as he gets a swig of water every few bites. He's going for one more day of day care this week. He's grown fond of Mary and it's getting easier to drop him off. Still not easy at all, but we're typical parents. Here are some photos and a video from the past few days.
July 6th, 2008
Two months after Anthony was born he was placed on a pretty tough medication regimen. Two months after that he went into the hospital. A month and a half after that he came home with a new tough medication regimen. Two months or so from there and here we are: .....normalcy? With all that's happened to our little family it's hard to think about what normal really means. If normal means a healthy, lively, laughing baby boy, then yeah things are normal. If it means having memories of hellish hospital stuff, then yeah things are normal there too. Angela and I are just now coming out of the shock and discussing what a trauma a lot of the experience was. Just looking at the photos now gives us the same sinking feelings that existed while in the middle of it all. And we have to admit that there is an after taste that puts all of reality into an odd perspective. Other than that.....things kinda are getting back to normal: mommy and daddy are both loosing sleep about their jobs, Anthony is doing fine at day care, and our home is a mess. It's tough after all the above trying to work all day. Daddy started back sooner than Mommy, but we both still feel it. We miss little Anthony all day long. This next week will be Anthony's first full week at group day care. The only affect we see from group care is that Anthony has developed some separation anxiety. He really wants us by his side more so than before. We'll see how this week goes. Anthony himself is doing very well. He's eating stage-three foods (not so pureed with some chunks). He's also eating cheerios and nibbling on some teething cookies. He doesn't show anything coming through yet, but he's droolin' a bunch, so something is on the way. Anthony is rolling over now a lot and he uses it as a way of locomotion. ....hey...whatever gets the job done. His toy use is becoming more sophisticated and fun to watch. He's also just on the edge of pulling himself up, which reminds me: I gotta lower his mattress in the crib. So good progress all around. ......Anthony is such a doll to play with. Once he gets laughing it becomes a very wonderful experience. I admit to being addicted to playing with him. ....... Last weekend Anthony, Daddy and Mommy enjoyed taking a little trip up north to meet the nice people in Mommy's Mommy Group. What an excellent group of people: nice, warm and engaging. Thanks for inviting us. We did have a great time. Currently we're going through another heat wave. This time round we're armed with an air conditioner. Depending on use we'll go for central-air next year. It's certainly getting hotter year by year. Anthony didn't do anything fireworky this year. We thought it was a bit early to take him to a fireworks show. Here are some photos from the past few days.
June 26th, 2008
Wow....has it been that long? Since Mommy and Daddy went back to work it's gotten pretty busy around the house. But a rhythm has set in and some patterns can now be relied upon. A more normal sleep pattern has kinda emerged...FINALLY (sorta..sigh)! Anthony's feeding is most certainly in a pattern and his appetite is very healthy. He's way into pureed veggies and all the meats (we make our own most times). Next up is chunkier foods. Anthony's strength is increasing and he's getting excellent report cards from his doctor. He's also growing. He's up past 28" and his weight is about 20 pounds. He's moving around a bit and scooting from time to time, but still doesn't like the crawling or too much tummy time. We're told this is a little normal, so keep on tryin'. He could just as well start walking without crawling. He does do a lot of rolling now. Anthony's personality is beginning to blossom. He's still shy around new folk, but is starting to exert himself with us: specific jabbering to get things and/or services, spitting to say he hates things (like some food....while eating), wanting to cuddle a lot, among many other quirks that still allows Anthony to keep the title of Cutest Baby in the World. Anthony and Mommy visited Daddy at work a couple weeks ago and Anthony accompanied Daddy to the office just today. .......We got a phone call early this morning from Anthony's day care provider letting us know that she had gone into the hospital with her own heart issues last night and needs to end her care for Anthony as she has been ordered to rest a bunch. We wish Mary the best in getting well. We made a few phone calls and found that a day care place around the corner from us had an open spot, and still had our deposit from before Anthony's birth. This was VERY fortunate. Sssooo....Anthony will have his first full day of classic group day care starting tomorrow morning. It will certainly be stressful for him, but we feel this may be a good thing for him in the long run. Life in general around the house is a welcomed semi routine. Compared to the past few months any emerging routine is welcomed. My favorite is the family walks in the evening. We're even using a bigger stroller now. Overall Anthony is happy and healthy. And his laugh is becoming quite the classic child like laugh. The video camera's never around when he's laughing like that. We've taken a bunch of photos in the past few days or so. Here's a handful.
July 16th, 2008
Work work work....and total concentration on Anthony.....that about sums up the last few days. Anthony is doing very well. He's getting to a sitting position on his own now and rolling over with ease. He certainly is fun to play and wrestle around with. Anthony is ever so close to crawling. He has all the movements down and is at the edge of taking off across the floor. It's quite the anticipated moment for us. His communication skills are also getting better. We are certain that he can say "Da-da", and I'm quite sure I can hear "Ma-ma", but it sounds like Na-na. He only says them when he wants some attention or is playing with that person, so it's safe to say he's getting it down right. Anthony's becoming classically curious, and if he could crawl, he'd be jamming those little fingers into every button on the entertainment system. We figure were at that point of needing to baby proof the homestead, but man-o-man is that stuff expensive. We took a look around the house and have some major work to do. First step: gate off the entire entertainment center and put bumpers on the table edges. And on we go. ......As I've mentioned work is back in full swing for us parental units, which also means continually adjusting to day care. We haven't really hit a routine on that yet, and Anthony is being affected. He was refusing solids for dinner for the past few days. We figured the situation and asked day care to help out with changing Anthony's routine. As of tonight he ate quite hardily. We'll see if the new schedule keeps. We haven't taken too many photos of late, but here's a pic of fun and a vid of a little dinner grossness. That's it for now.
August 8th, 2008
You can't blame us for wanting to just plain old hang out and have fun with Anthony for a while. Of course that means web site and household freshness begins to fade. The past three weeks have been really a lot of fun with a lot of growth. Anthony has made some really great strides. On the mundane side his weight is up to a heavy 20 pounds. His height is about 28.5". That's 28.5 inches tall, as in standing. Anthony has begun to stand himself up just this past week. Grabbing on to fences, toys, people...and ending up in predicaments where rescue is needed. He keeps on trying and its fun to watch. About two weeks ago Anthony and I (Daddy) were sitting on the floor. I began crawling around picking up some toys when he began laughing while watching my arms and hands. I encouraged him and slowly and cautiously he began to crawl. He didn't crawl much, just one inch at a time, but since then he's picking up steam and going for longer runs. The hallway has become old news. He's also getting quite strong as per doctor's opinion too. I've wrestled him around on the bed a bit and been amazed that he's fast and turning into a tough little kid. Most of his Babyzilla style attacks end in some kind of lovable slobbery wetness. Anthony's utilizing more of his toys' functionalities. He's now spending a lot of time crawling in and out of his toy house and pressing buttons and things he couldn't reach before. He's also expressing himself more with dinner antics and preferences for books, toys and activities. He's fun to play with as he's quite active, especially since he became mobile. He's also jabbering with more syllables, so talking is somewhere around the corner. The Mama-Dadda thing is down, but not as articulated. And speaking of mouth control: Anthony is getting his teeth! His front bottom two are almost all the way in. YES...they're sharp. (he bit my nose) So now he's eating chunkier foods.....and making a mess with every meal. We've started hosing him down after dinner. Honest, I just bring him in the shower with me and hose him down. He loves it. Anthony is sleeping a bit longer during the night now. He still wakes up once, but goes back to sleep with little problem. So we're able to get a bit more sleep.........just in time to get sick from something passed in day care. Get used to it, right? (cough) Anthony took to day care well, but he does have a bit of an attachment issue. He doesn't like to be left alone or having to watch you walk away from him (even just across the room). We're getting him used to being alone, but we figured he'd have a little fear like this. He'll be fine. One curious behaviour that I am convinced now is genetically inherited: he tosses and turns in bed worse than his mother. I swear I've watched him on the monitor shift from corner to corner in his crib within minutes. It's a full time job to keep a blanket on him. As always, he's cute as a button and an inspiration to us to try and overcome anything, but do it with a smile. .........We've been taking a bunch of photos and they've been piling up, so here's a bunch. And some videos. The August 5th shots were taken on our 2nd Wedding Anniversary. We decided to take a long day off together as a family.
September 11th, 2008
Glamma and Poppies are here!!!!!!!!! ...all the way of New York. They arrived this past Saturday and Anthony was waiting for them on the front lawn. Grandma & Poppies' first time seeing Anthony was slow and steady. Anthony was initially tense as the car pulled up and Grandma B, Grandpa B and Grandpa A got out. He gripped me tight and Grandma slowly approached. It was certainly a touching moment for their first meeting. Anthony stayed in my arms for just 15 minutes before Grandma got to hold him. Within 24 hours Grandma and Poppies were enjoying the full treatment....complete with diaper changes and feeding time. Anthony is still a little scared of Poppies' moustache. The past four days were punctuated by the fact that it was Grandma B's birthday on Sunday. Plenty of baby hugs and kisses were had that day. More on Glamma and Poppies visit later. In the meantime..... What's been going on since the last update? In a word: lots. That is lots from a childhood perspective. Mommy and Daddy have been working a bunch and taking lots of time for their own doctors' visits. Anthony seems to have brought home the dreaded Day Care Disease....three times. We've gotten over our colds, but poor Anthony has had a cough for the past two months, not to mention a perpetual runny nose. His nervous parents brought him to the doctors 5 times in worry for his past medical history. All doctors, including his cardiologist, say Anthony is fine for a child with a cold and that colds can last a long time or longer. He's getting better and his cough is getting looser, but poor little guy still is not 100%. We're hoping that his staying home for this whole week will give him a chance to recover before going back to day care. .........As for Anthony's personal progress: he's doing GREAT! He's crawling at one hella fast pace and starting to stand on his own (for just a few seconds). He's also walking a bit with assistance and seems very close to taking his own first steps (any week now). Anthony has got plenty of new toys that never were around when I was a kid: robot chase balls, robot dogs, talking toys. His favorite toy? ....Mommy's big round red exercise ball. He pushes it around the house for hours. (whatever floats your boat.) He's talking more with more syllables, but not saying anything coherent. He does say "Ba" for ball, Dadda, Mamma, and is doing his best to mimic new words, but he's just at the edge of his abilities now. Anthony STILL isn't in a pattern of sleeping through the night. Mainly because of his two month cold/cough. He wakes up two to three times a night hacking away and takes a couple long naps during the day. We're hoping his nighttime sleep gets longer as his cold goes away. We got the vaporizer running all night long. Anthony is also teething again with his top right center tooth just barely at the surface. He's taken to sucking his thumb again while playing with his new tooth. He's learning new ways to use his teeth as he bites down on his sippy cup and carries it doggie-newspaper style as he crawls. Anthony is about 21 pounds now and is almost 26 inches tall, and can squirm out of your arms with the best of them. Yet he's also quite cuddly and very affectionate. He's also very well behaved. We took Grandma B to dinner Sunday night for her birthday. We were going to have a quiet celebration at home, but switched at the last minute. Anthony did great at the restaurant trying out new pastas, breads, olives, meats and other things. He had a ball sitting at the highchair that puts him at the table with us. And even "worked the room" with some cute girls at the other tables. It was fun. Mommy and Daddy certainly need to bring Anthony out more often. We've been so constrained by his medical history in our heads that it's hard to consider taking him out to strange places. We did buy a new hip sling carrier thing that allows Daddy (with his bad back) to carry Anthony on his hip for a bit longer. So, we'll get him out more. The parenting group that Mommy belongs to are very nice people, and we'll hook up with them more often. Meanwhile, Daddy has been obsessing on all things cell phone based: reading tech blogs, and reviewing everything on the market that is soon to come. Sorry folks, Blackberry is still the best devices out there. iPhone is good if you just want to talk and play media. But Blackberry helps you get things done. (enough of my obsessive soap box). Mommy has been obsessing over her Daughters of the American Revolution chapter activities. Glamma and Poppies are having a ball with little Anthony. He's warmed up to them real good, but still has some moments where he'd rather be in Mommy and Daddy's lap. Today (9/11) we're headed out to the mall to buy Anthony some new clothes and see more of the neighborhood. We have taken some pictures of the baby lately, but certainly not enough for our tastes. Here are some from the past month. And here's the first set from Glamma & Poppies' visit. Cheers.
September 12th, 2008
Shopping, taking walks, house work, talking, laughing, and playing with every single toy Anthony owns inside and outside. That's the sum of Glamma and Poppies' visit so far, which is exactly what the doctor ordered. Anthony is really enjoying being with his grandparents, and they in turn are having fun. It's going to be a tough goodbye this weekend. Anthony has new clothes and new toys from his grandparents as well as teaching him how best to use pots and pans. Anthony's cough is doing a little bit better, but he still hacks some during the night. Grandma and Poppies had a great time with Anthony at the Mall and at the park. Here's some more pictures of the fun. Please be patient and enjoy the pictures as the videos load.
Anthony Update: September 13th, 2008
Anthony misses his Glamma and Poppies. We dropped off Anthony's grandparents this morning for the bus trip to the airport, and the plane ride back to NY. Anthony got to spend time with them in the morning helping them pack, get their stuff ready and offer blabbering of affection. Glamma held it together for the morning, but most likely cried on the bus. Anthony figured something was different as Mommy and Daddy brought him home to a quieter house with two less people. He spent the day being bored with just the two of us and was a semi-brat for most of the day. Say what you will about his level of understanding, but he certainly is acting different today. Anthony's Grandma P shows up for a three day visit starting tomorrow. We'll put some shots up of that encounter as well. In the meantime, here
are some pics and vids from today's goodbyes.
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