Tyler on daddy's lap!
Parker with mommy! So it’s been a week since the “Tribute to Tyler and Parker”, AKA the “Bubbie Birthday Bash”. I think this week was the busiest ever, not giving me a lot of time to reflect about our year, which was fine, actually. First I’ll regale you with the results of our multitude of doctor’s appointments, then I’ll sum up the birthday bash.
M.I.N.D. Institute – 1 year evaluations
Tuesday the boys had their assessment with the M.I.N.D. Institute – a UC Davis affiliate where they test and refer services for babies who spent time in their NICU. Both boys were tested by Pediatricians – fine & gross motor skills assessed, as well as language, problem solving & physicals. The boys did well – Parker did exceptionally well on language & problem solving, scoring into his actual age (the doctor was impressed). Tyler did very well on his gross motor skills – not surprising since he’s almost walking! Parker was average on his gross motor skills, while Tyler was low on language and problem solving – but I question the tester and the WAY she presented to him. When I asked John specifics on what Tyler didn’t do, it sounded like he wasn’t prompted the right way – he can do most of the required skills, I’ve seen him in therapy and at home. Tyler has been referred to an ENT (ears, nose, throat doc) because of his scores (possible hearing loss?) – which ultimately doesn’t hurt anything. I just wonder if they looked at the evaluations from the Developmental Therapist – I brought copies of their latest assessments showing that Tyler CAN “peek-a-boo”, pull objects from a jar, grab ½ covered objects, etc. We’ll see what results from the ENT. The boys will return to the institute for an assessment in 9 months, then 9 months later. If at either of these assessments they see a need for a service/medical follow up, they will refer at that time.
Physical Therapy (PT) – First Day
Tuesday was also the first Physical Therapy (PT) appointment. Parker was a BIG pill and cried the entire time! Poor Darlene, the PT, was trying to push through and continue his therapy even though he was “bubbing” the entire time. Finally I got him and passed on Tyler who of course was fabulous for her and did well. I hope this week will bode better for Darlene and Parker’s relationship – it did take him a few weeks to get used to Danielle, the Developmental Therapist. Now both boys love playing with Danielle and show their “true colors” – good and bad! Ha ha! I hear her sweet voice now, “Tyler, you have to sit for this game, you can stand later!”
GI – Lost Weight
Wednesday was an appointment with our GI. Both boys lost weight, so Tyler is getting an increased volume during the day to “beef” him up before G-tube surgery (we’re going to gavage the difference). We discussed the surgery consult for Tyler on July 9th and besides increasing his feeds, we’re not making any changes to Tyler’s food. Parker hasn’t been eating well and there always seems to be an excuse – teething, his cold, teething, etc. We are going to try to a new formula that is dairy based– the GI says it tastes better than his elemental formula and it may increase his feeds. Right now his reflux seems better so we’re hoping that his stomach and reflux can handle a dairy product. We were going to start the new formula right away but Parker caught a terrible cold and is snotty and coughing so we’ll start it when he’s 100%. This will allow a better trial of the new formula.
Pulmonology – Revoking our “Good Parenting” Award
Well, remember a few months ago when I told you about our fabulous appointment with the Pulmonologist? He said John and I were doing a fabulous job and ask me to create a month-by-month picture comparison of the boys – ring a bell? Well, this is the same doctor who nearly accused those SAME parents of starving their children! Yes, the boys have lost weight but we are seeing a GI every two to three weeks and she has been tracking their feeding/weight. The Pulmonologist came in with a disappointing tone and told us that the boys have not grown the last two months and should have gotten G-tubes a long time ago. He said they should be in the 75% in weight and that we are stunting their brain and lung growth. We told him about our consult with Dr. Marr for Tyler in July – he told us he would send over another referral for Parker because he also needs a tube. We were in shock, to say the least. Not because we don’t believe him, but because we’ve been seeing the GI who had us convinced that the boys weight was “marginal” but that we weren’t doing any damage! If we EVER thought their weight was hurting them, we would’ve gotten G-tubes a long time ago! The Pulm doc made it sound like they needed tubes months ago and we’ve been dragging our feet to get them. HOLY! So, I called the surgeon the next day and scheduled Parker to be seen at the same time as Tyler. And sure enough, Parker is sick again and not taking full feeds. Yes, a G-tube would help us feed Parker – we get it.
John and I are sooo frustrated. We ONLY want to do what’s best for the boys and to have conflicting information from doctors is confusing and maddening. We now agree that both boys should get tubes, but until this point nobody has pushed us to get them! How are we supposed to know “when”? I’m sorry, what’s my history with micro-preemie or infant eating issues? Motherhood – one year. I research as much as I can, but the bottom line is we trusted that our doctors would inform us appropriately – isn’t that right? Guess not!
So, it looks like we are going in for a double tubing. We didn’t see this one coming. It’d better happen in July because I hear that it takes 2-3 weeks for the site to heal and not hurt anymore. I really don’t need to deal with two bubbing bubbies! With John home in July, that really is the best time to do it. Okay, frustrating topic over.
Birthday Bubbies!
So the boys had their BIG celebration on Sunday (21st) and over 70 of their closest friends and family members came by to see them. What a party! I think most everyone came right at 3pm because I was in the walkway into the heart of the house and John was near the doorway yelling to me, “Keep everyone moving forward! Tell people to go outside!” I was chatting with people coming in, clogging up the flow apparently. It resembled a wedding receiving line – gotta love it! It was so nice to see folks I hadn’t seen in over a year. And for some people, they met the boys for the first time. Poor Parker was immediately overwhelmed and wanted mommy every time he saw me. Then there was Tyler – Mr. Easy. Below I posted pictures of Tyler with a myriad of people – I think “Where’s Tyler?” was the norm that day. He loved every bit of the attention and being passed around was like playtime for him.
I must THANK my Aunt Teresa for “sponsoring” the fabulous tribute, Helen Whitelaw and Natalia Bedes Correnti for working their TAILS off throughout the party (they didn’t stop working - machines I tell ya), and my cousin Katie Rose and my mother for working on party prep days before the celebration. I just couldn’t do it alone and they were my heroes!
This year has been surreal for me and in many ways, I’m not sure I’ve fully recovered. The old, healthy Heather has yet to show her face. As I strive to gain “control” over the boys continuing health issues, I find it hard to get control over my own. Sometimes I feel as though I’m just spinning my wheels, not getting very far. I think back to this time last year and it’s hard to remember the details because I was so exhausted, scared and dazed. I’m not sure if the numbness of the year has fully worn off. I do feel blessed that these two amazing little boys are in my life, no matter what the circumstances were in getting them. They are worth any pain I had to endure and all sacrifices made - none too grand. I look forward to a new year and new beginning for me and the boys. Here’s to a year filled with progress, success, and a lot of love!
Thank you to everyone who was with us this past year – making meals, watching the boys so I could shower, sending gift cards for baby stuff, dropping us emails & touching base, and just being there. I can’t fully express through this vehicle exactly HOW much it all meant to me (& John). Please know that THANK YOU doesn’t fully convey how truly grateful we are!
Enough already – here are some fabulous pictures of the boys first birthday celebration! What a tribute to the boys!
M.I.N.D. Institute – 1 year evaluations
Tuesday the boys had their assessment with the M.I.N.D. Institute – a UC Davis affiliate where they test and refer services for babies who spent time in their NICU. Both boys were tested by Pediatricians – fine & gross motor skills assessed, as well as language, problem solving & physicals. The boys did well – Parker did exceptionally well on language & problem solving, scoring into his actual age (the doctor was impressed). Tyler did very well on his gross motor skills – not surprising since he’s almost walking! Parker was average on his gross motor skills, while Tyler was low on language and problem solving – but I question the tester and the WAY she presented to him. When I asked John specifics on what Tyler didn’t do, it sounded like he wasn’t prompted the right way – he can do most of the required skills, I’ve seen him in therapy and at home. Tyler has been referred to an ENT (ears, nose, throat doc) because of his scores (possible hearing loss?) – which ultimately doesn’t hurt anything. I just wonder if they looked at the evaluations from the Developmental Therapist – I brought copies of their latest assessments showing that Tyler CAN “peek-a-boo”, pull objects from a jar, grab ½ covered objects, etc. We’ll see what results from the ENT. The boys will return to the institute for an assessment in 9 months, then 9 months later. If at either of these assessments they see a need for a service/medical follow up, they will refer at that time.
Physical Therapy (PT) – First Day
Tuesday was also the first Physical Therapy (PT) appointment. Parker was a BIG pill and cried the entire time! Poor Darlene, the PT, was trying to push through and continue his therapy even though he was “bubbing” the entire time. Finally I got him and passed on Tyler who of course was fabulous for her and did well. I hope this week will bode better for Darlene and Parker’s relationship – it did take him a few weeks to get used to Danielle, the Developmental Therapist. Now both boys love playing with Danielle and show their “true colors” – good and bad! Ha ha! I hear her sweet voice now, “Tyler, you have to sit for this game, you can stand later!”
GI – Lost Weight
Wednesday was an appointment with our GI. Both boys lost weight, so Tyler is getting an increased volume during the day to “beef” him up before G-tube surgery (we’re going to gavage the difference). We discussed the surgery consult for Tyler on July 9th and besides increasing his feeds, we’re not making any changes to Tyler’s food. Parker hasn’t been eating well and there always seems to be an excuse – teething, his cold, teething, etc. We are going to try to a new formula that is dairy based– the GI says it tastes better than his elemental formula and it may increase his feeds. Right now his reflux seems better so we’re hoping that his stomach and reflux can handle a dairy product. We were going to start the new formula right away but Parker caught a terrible cold and is snotty and coughing so we’ll start it when he’s 100%. This will allow a better trial of the new formula.
Pulmonology – Revoking our “Good Parenting” Award
Well, remember a few months ago when I told you about our fabulous appointment with the Pulmonologist? He said John and I were doing a fabulous job and ask me to create a month-by-month picture comparison of the boys – ring a bell? Well, this is the same doctor who nearly accused those SAME parents of starving their children! Yes, the boys have lost weight but we are seeing a GI every two to three weeks and she has been tracking their feeding/weight. The Pulmonologist came in with a disappointing tone and told us that the boys have not grown the last two months and should have gotten G-tubes a long time ago. He said they should be in the 75% in weight and that we are stunting their brain and lung growth. We told him about our consult with Dr. Marr for Tyler in July – he told us he would send over another referral for Parker because he also needs a tube. We were in shock, to say the least. Not because we don’t believe him, but because we’ve been seeing the GI who had us convinced that the boys weight was “marginal” but that we weren’t doing any damage! If we EVER thought their weight was hurting them, we would’ve gotten G-tubes a long time ago! The Pulm doc made it sound like they needed tubes months ago and we’ve been dragging our feet to get them. HOLY! So, I called the surgeon the next day and scheduled Parker to be seen at the same time as Tyler. And sure enough, Parker is sick again and not taking full feeds. Yes, a G-tube would help us feed Parker – we get it.
John and I are sooo frustrated. We ONLY want to do what’s best for the boys and to have conflicting information from doctors is confusing and maddening. We now agree that both boys should get tubes, but until this point nobody has pushed us to get them! How are we supposed to know “when”? I’m sorry, what’s my history with micro-preemie or infant eating issues? Motherhood – one year. I research as much as I can, but the bottom line is we trusted that our doctors would inform us appropriately – isn’t that right? Guess not!
So, it looks like we are going in for a double tubing. We didn’t see this one coming. It’d better happen in July because I hear that it takes 2-3 weeks for the site to heal and not hurt anymore. I really don’t need to deal with two bubbing bubbies! With John home in July, that really is the best time to do it. Okay, frustrating topic over.
Birthday Bubbies!
So the boys had their BIG celebration on Sunday (21st) and over 70 of their closest friends and family members came by to see them. What a party! I think most everyone came right at 3pm because I was in the walkway into the heart of the house and John was near the doorway yelling to me, “Keep everyone moving forward! Tell people to go outside!” I was chatting with people coming in, clogging up the flow apparently. It resembled a wedding receiving line – gotta love it! It was so nice to see folks I hadn’t seen in over a year. And for some people, they met the boys for the first time. Poor Parker was immediately overwhelmed and wanted mommy every time he saw me. Then there was Tyler – Mr. Easy. Below I posted pictures of Tyler with a myriad of people – I think “Where’s Tyler?” was the norm that day. He loved every bit of the attention and being passed around was like playtime for him.
I must THANK my Aunt Teresa for “sponsoring” the fabulous tribute, Helen Whitelaw and Natalia Bedes Correnti for working their TAILS off throughout the party (they didn’t stop working - machines I tell ya), and my cousin Katie Rose and my mother for working on party prep days before the celebration. I just couldn’t do it alone and they were my heroes!
This year has been surreal for me and in many ways, I’m not sure I’ve fully recovered. The old, healthy Heather has yet to show her face. As I strive to gain “control” over the boys continuing health issues, I find it hard to get control over my own. Sometimes I feel as though I’m just spinning my wheels, not getting very far. I think back to this time last year and it’s hard to remember the details because I was so exhausted, scared and dazed. I’m not sure if the numbness of the year has fully worn off. I do feel blessed that these two amazing little boys are in my life, no matter what the circumstances were in getting them. They are worth any pain I had to endure and all sacrifices made - none too grand. I look forward to a new year and new beginning for me and the boys. Here’s to a year filled with progress, success, and a lot of love!
Thank you to everyone who was with us this past year – making meals, watching the boys so I could shower, sending gift cards for baby stuff, dropping us emails & touching base, and just being there. I can’t fully express through this vehicle exactly HOW much it all meant to me (& John). Please know that THANK YOU doesn’t fully convey how truly grateful we are!
Enough already – here are some fabulous pictures of the boys first birthday celebration! What a tribute to the boys!
1 comment:
I just read the whole "Birthday Report". What a wonderful celebration! What fun and delight had by all. -Adn I am certain deep gratitude for where you are after this past year.
And what a handsome family! Bless you all.
Karla
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