Wow, a whole month!

It appears I went over a whole month without updating about Ryan!  I have no excuse other than it's been so completely busy over here.  But, we're on a week long break from school so I'm making time this fine Sunday morning to post an update.  This is my "church time" since we aren't risking bringing the kids to church during flu season.  Just one of the bummer side effects of preemie flu season lockdown, but we know it's temporary and we need to do what's best to keep Ryan from getting sick.

So, here are some updates.  It's always hard to know where to begin!

Lungs/heart:  I already updated about our last pulmonary hypertension clinic in September.  The cardiologist was pleased that his PPHN seems to be on its way out again, but we're keeping him on the meds through flu season as a safety net.  I didn't get to meet with the pulmonologist because I had to leave after waiting a few hours.  Since then, we have been rescheduled for the next PPHN clinic at the end of December.  We've been in to the pulmonologist's office just to get the first RSV shot of FIVE :( but we didn't meet with the doctor.  A nurse practitioner checked him over and he's been doing pretty well as far as sats on his oxygen.  He does still desat to the low 90s/high 80s if his prongs come out in his sleep, so we know he's still not ready to come off the o2 yet, but part of me wonders if he's just so used to it now that his body doesn't send his lungs the signal to start taking deeper breaths when the prongs come out to compensate.  But, we don't really want to mess with anything during flu season because he needs all the extra support he can get, so we'll readdress this in the spring.  He's currently on 3/4 liters of oxygen 24/7 and he's satting great (97-100).

Hearing:  We're still putting the hearing aids in to have him get used to wearing them, but when the batteries die we don't worry about switching them.  They don't help him hear sound, so wearing them is just practice for when he gets the Cochlear Implants placed.  We are still on track for that to happen in January, but we are currently waiting on a call back from the scheduler at USC who needs to set up a pre-surgery assessment appointment.  The director of education from USC called me and basically did a phone interview to see what I knew about the Cochlear Implant, success/fail rates, follow up procedures, etc.  I think she was pretty impressed with my research.  She started by asking his medical history, and I was able to rattle off every test, MRI, CT scan, indication of hearing/non-hearing, etc from birth to present without skipping a beat.  Then when she asked what I knew about CI, I was able to tell her that I had spoken with people from California Deaf Blind Children's Services, the deaf/hard of hearing specialists in our local school district, our regional center, and even a few different parents who have children with the implants (thanks to all of YOU guys for those connections!) and she was definitely pleased.  I also told her that we had decided on our own to take him to a developmental neurologist to see if SHE thought he'd be a good candidate.  We are aware that the implants will only work as well as the brain will be able to receive the sound input and process it in a way that will translate into sound, and the neurologist was very optimistic.  So, I think we've saved ourselves a lot of time by getting those things taken care of and out of the way before scheduling the surgery.  Now we just need to meet with them and get the exact date in January. :)  The only thing we could foresee hindering this would be if he got sick in the meantime, so we are being extra cautious about exposing him to germs, etc. 

GI and Blended Diet:  About 2 weeks ago, Ryan's vomiting started to increase again and we couldn't figure out what we were doing wrong.  We'd tried eliminating certain things like dairy, trying different rates and volumes, etc., to no avail.  Finally, we decided, maybe his super high fat/high calorie recipe was just too much for him to handle.  So we decided to change it up and just think like "normal" parents.  What would we normally feed a 20 month old?  Surely not avocado with tomato paste and honey and molasses and coconut oil and almonds and banana and blah blah blah all mixed together!  So, we would take whatever we were eating (or Dani was eating) and just blend it up with some liquids to thin it out.  Think mac and cheese with some banana and apple juice.  We also started doing more feeds throughout the day at smaller volumes, and it's been working great!  He's only thrown up one time in the last 8-10 days, which is miraculous.  So we are going to stick with this for a while and see how it affects his weight.  So far, he has lost a few ounces, but nothing to concerning.  If he gets under 18lbs we'll have to make some adjustments.  I feel like having his stomach not so full all the time is actually helping with his activity level, which means his burning more calories rolling around and playing...so, you know, catch 22.

Eyes:  Ryan is still allowing us to put in his contacts, but he sure does rub his eyes a lot when they are in!  I guess it's good that he's noticing and somewhat protesting, but dang those things are hard to find when they pop out.  And he is getting really good at making them pop out.  So we spend a lot of time on all fours crawling around trying to retrieve them :)  

Development:  This might be a big one.  Ryan is still significantly delayed in his development.  At 20 months/17 months adjusted, he's not sitting up on his own, not crawling, etc.  His therapists do a lot of assessments on him, and a few weeks ago they brought up Autism.  The big indicator is that he doesn't make eye contact with us.  We assumed that it had something to do with being deaf, that he didn't know sound was coming out of our mouths so he had no real reason to look at our faces.  But, we came to find out that the opposite is actually true for deaf kids.  If they can't hear, they have MORE motivation to look at you to see your reaction as they are exploring things.  So if they pick up a toy they aren't sure about, they might turn and look back at mommy to see if she gives a face of approval or denial.  Another indicator is the way he focuses on staring at certain things, like his hands for example.  He'll put his hand right in front of his eyes and just stare.  Again, we thought maybe this was part of his visual impairment, but apparently it's an indicator of Autism.  So, while we have definitely noticed all of these issues, we always attributed them to something else that we thought he would just "grow out of" as we worked on improving his hearing and vision.  Since that is not the case, we will be documenting all of his behaviors and the therapists are going to apply for more therapy hours for him that will focus on social development to address this.  As he does improve, this is the type of label they can remove down the road if necessary, but for now, we're going to look at it as a positive to get him more help and more services.  It also gives us a direction and strategies we can use with him to help this improve when the therapists aren't here with him.  And on the bright side, he is making gains, albeit slowly.  That's all we can hope for!

General:  Just over a month ago the full time nurse we had moved out of state, and then we ended up with two nurses who split the week.  I was a bit nervous about this at first, but both of his new nurses are great and they each have their own style, so it's good for Ryan to have a little variety, I think.  He really is such an easy, mellow little guy aside from all the crazy medical issues, so he's probably a nurses dream patient :)  My mom has also been a huge help with him and Dani as always. 

While Ryan's overall medical issues listed above are pretty stable or improving, we have a small issue we're dealing with right now in that he does not do well with changes in the weather.  Since it's been flip flopping between hot and dry and cold and damp, he's been waking up congested and coughing.  We actually called in this morning to see if there was anything over the counter we could give to help with the mucous, and they actually recommended honey for children his age.  They said that in side by side studies with guaifenesin, honey performed just as well without the risk of side effects.  So, we've been giving him honey orally and it really does seem to help. 

I think that's everything...WHEW!  We are really looking forward to this week at home spending time with these guys and seeing family for Thanksgiving.  This will be the first time we'll have to bring him a pack and play or something to contain him since he can roll around pretty much anywhere now!  We hope you all have a lovely and blessed Thanksgiving as well.  So much for which to be thankful!

Spray Pal

I just wanted to give a huge shout out to Daniel Tim Tim for making this awesome video for our Round 2 video entry in the Intuit Small Business Big Game contest.  If you watch, you can catch a few glimpses of our little fighter and see how big he's getting!  We didn't invent the Spray Pal to make money, we created it because we saw a problem and wanted to solve it just to make our own lives easier.  We started to realize that others could benefit from the idea, so we moved forward with the patent process and bringing it to market.  We went slowly and carefully, and then Ryan was born.  The crazy thing is, that was the time when things started to really take of with Spray Pal.  Now we continue to move forward with Spray Pal for various reasons.  1) It makes using cloth diapers easier which is good for our earth.  2) The proceeds allow me to teach part time so I can spend the rest of the time home with my kids and take Ryan to doctor's appointments and therapies. 3) It helps pay for the extra medical expenses you don't really think about...prescriptions, blended diet ingredients, hearing aids, contact lenses, etc, etc, LOL.  The expenses with a special needs kiddo can add up, but we are truly blessed that with Spray Pal we are managing it ok and we would definitely not have it any other way!  Voting ends October 13th and we truly appreciate all of your support.  If you'd like to vote, you can click on the link below and vote daily.  No information input is required, just click the yellow voting box.  Thanks so much!

https://www.smallbusinessbiggame.com/CA/Spray-Pal---Cloth-Diaper-Sprayer-Splatter-Shield/373599

EDAC Appointment

I just wanted to quickly update about Ryan's EDAC follow-up today.  Basically, we bring him in to CHOC to get evaluated by a nurse, dietician, two therapists, a social worker, and finally a physician to see how his overall health and development is going after being discharged from the NICU.  He had his first eval like this back in January, so it was kinda cool to have some stats to compare with and see if he's shown any improvement.

The nurse and dietician were really impressed with his relative overall health, weight gain over the last few months (thank you blenderized diet), and regularity (again, thank you blenderized diet).  They asked questions about flu shot and synagis, which we have all scheduled, so that portion was pretty quick.

Then the therapists brought him down to a mat and did various assessments on his gross motor, fine motor, and cognitive development.  This was the coolest part of the appointment because he performed SO much better this time than the first time.  He even babbled up a storm, which is especially impressive since they confirmed what we already know that he doesn't respond to sound even with his hearing aids in.  At his last appointment, his cognitive development was rated  at 4 months, and this time they put him at 7 months!  Last time his gross motor was that of a 1 month old, and this time it was around 4 months!  And fine motor wasn't even on their rating chart last time, but this time it was also 4 months!  So overall, though he is severely delayed, he is working on his own curve and it's moving in the right direction!  I can only imagine how amazing his development will grow once he gets Cochlear Implants (God willing) and can hopefully hear our encouraging words and teachings!



Thanks for all the positive thoughts and prayers you sent his way today, it was really nice to have another appointment with GOOD news this week!

Pulmonary Hypertension Clinic

Yesterday morning I took Ryan to his Pulmonary Hypertension clinic appointment.  We first had to have an echo done in the cardiology office across the street, then drive over to CHOC and check in for the PPHN clinic.  It was also our first day without our awesome home nurse (who is moving to Washington and will be dearly missed), so needless to say it was a crazy morning!  We were a few minutes late to the echo by the time I navigated rush our traffic and the parking structure.  Once that was done, Ryan and I booked it over to the clinic structure, and of course even the handicapped spots were full.  So, by the time we parked over there and made our way in, we checked in about 25 minutes late.  Not the best start.

As we waited in the large and crowded waiting area, the sound of children coughing haphazardly into the air made me cringe.  I carefully placed a blanket over Ryan's car seat so to hopefully shield him from the germs.  Just more evidence that the flu season is upon us, and preemie lockdown is in full effect in our house.

When we were called back, the nurse had us waiting in a crowded hallway for one of the weighing station rooms to open up.  He had just been weighed and measured in the cardiology office not even an hour before that, so I asked if we could just use those stats and bypass the crowd of germs (yes, this is how my mind's eye see people now.  Just germ carriers.  Especially kids.  And even more especially kids who are coughing like crazy in a pulmonary office.  I mean, really).  She consented and led us to our room where she took his blood pressure and sats (he was satting 97-98 on .5 liters).

Then, we waited.  And waited.  And finally the cardiologist came in.  At this clinic, we typically get to see the pulmonologist and cardiologist at the same time, which is nice because I feel like we get at least 2 of his specialist on the same page.  Funnily enough, it seems as though most times we meet like that, they blame the other specialty departments for his lack of real improvement.  For example, last time it was, "I'm so surprised he still needs the oxygen, it must be his reflux.  We'll have to talk to GI about this and change up the meds.  Oh, and let's start adding pediasure to get him to gain weight."

This time, the cardiologist came in solo, but we were happy to see her (well, I was because Ryan was fast asleep on my lap by that point) because it was one of the doctors that knows Ryan well.  She went over the results from the echo that morning, and GREAT news, the pressures in his heart are unreadable again!  So, last time they were high enough to read at 30, which was a mild amount of pressure, and now it's so mild that it's not readable.  This happened last year right around this time, and then he got sick with RSV and he had a bad sedation and we went back to square one with the PPHN. So, we are keeping him on the meds through the flu season even though his PPHN seems to be much better, just to give him a little extra protection in case he gets sick again.  We will also get the synagis shot for RSV as soon as it's available, which should be early Nov.

Then she left and we waited some more for the pulmonologist.  Finally, I looked at my phone and realized we had been at appointments for 2.5 hours.  I told myself if he wasn't seen by 10:30, we were leaving.  I know that sounds all rebellious, but honestly, I wasn't trying to be a rebel...I just couldn't take it anymore.  The entire time we were in there I could still hear the sick kids coughing all around us and I didn't want him to be there anymore.  I peeked out the door to let a nurse know we had to leave, and there was no one in the hallway, so then I started to think maybe we had been forgotten!  So, we walked out.  I stopped out front at the checkin desk to let them know I was leaving and I told them I'd make a new appointment when I got home, which I did. I made sure to make it for a date when the synagis shot would be ready for him so we wouldn't have to come back twice, and I made it for the Newport Beach satellite office because it's much smaller and typically less crowded, and it seems like there's less chance of him contracting an illness in that environment.  Call me paranoid, I don't really care :)

Then today at lunch today the nurse who would've checked us out yesterday called me to let me know she had scheduled Ryan for a new PPHN appointment on December 23rd.  I told her, and these were my exact words, "You can set the appointment, but I can't guarantee I'll bring him in.  I was already hearing so many sick kids coughing over there yesterday, and I'll be damned if I'm going to bring him into an appointment just to have him catch something at the hospital!"  She said she understood, lol.  So most likely I'll just keep scheduling the appointments in NB for one month apart where we can meet with the pulmonologist and get his synagis shot within the correct 30 day time frame, and avoid the big hospital altogether.

The only problem is going to be his therapy sessions.  After December 31st, our insurance will cover 20 sessions again, and we have to use those up before the regional center can cover the in home therapy that we are receiving right now.  Which means...right smack dab in the middle of flu season we'll have to bring him back to CHOC 4 times a week for 5 weeks to meet with therapists who haven't seen him in a year before we can go back to having the therapists who know him and his goals so well work with him in our home.  Just one more of those frustrating hoops we have to jump through unless I can figure out a way around it.

We have a new home nurse starting tomorrow, but she can only work 3 days a week, so the nursing company is going to continue the search for someone full time to replace the nurse who is leaving us, and who has been with us since April.  It really is hard to lose a good nurse because she's like a member of the family, spending every day at home with us caring for our son.  Tomorrow we have our EDAC appointment, which they do every 6-8 months or so to check his development after release from the NICU.  Should be interesting to see how much he has grown and developed since his last appointment in January!

Please pray that he continues to grow and thrive as well as he has these last few months.  Every day that goes by as we head into flu season, I say a thankful prayer that he stays healthy and avoids getting sick.  He's been gaining weight well (he weighs 18 pounds 13 oz now thanks to the blenderized diet!) and that will help, but we'd love to avoid any and all illness if possible.  Thank you!!

Trying to Keep Up

I just got finished rocking Ryan to sleep, and I was feeling nostalgic thinking back to the days when he was still in the NICU and I would update his blog every single night.  While I do feel guilty for not keeping up with the blog as much as I did back then, I know it's for good reason.  Now that all four members of our family are home under one roof, there just isn't enough time in the day!!  I was inspired by a conversation with a friend tonight to update, though.  Even though I don't update frequently, I can still see through the blog stats that we get a lot of hits here each day.  My friend reminded me that people who are in a similar situation want to find hope and information, and most times they turn to the internet.  For moms with preemies with special needs, many of their searches lead them here.  Let's face it, Ryan has a lot of searchable tag words associated with him.  Preemie, pulmonary hypertension, chronic lung disease, hard of hearing/deaf, visually impaired, oxygen, gtube, blenderized diet, the list could go on.  So, as much as I feel like I don't have the time, I need to be better about updating because I know there are people out there who have kids with one or more of the same issues and just want to know how Ryan is doing.

Lungs/Heart:  Nothing new to report here.  He's still on 3/4 liter of oxygen 24/7.  He's still on nebulizer treatments twice a day, aldactazide diuretics to keep fluid out of his lungs, and sildenafil for his pulmonary hypertension.  We have a pulmonary hypertension clinic coming up next week where he will meet with his pulmonologist and cardiologist and have an echo to check the status of his PPHN.  His sats have been a bit better than usual lately, which is excellent timing as we turn that corner into flu season.  We are hoping and praying so hard that we can keep our home as germ free as possible this winter so he doesn't wind up back in the hospital.  This is quite a feat with a 3 year old in preschool and two elementary school teachers surrounded by kids all day.  We haven't had to go on full on lock down quite yet, so we've been getting out of the house as much as possible on the weekends while we still have the freedom to do so.

GI:  He is still throwing up occasionally.  Not quite daily, but probably 4-5 times a week.  It's totally random and we have no idea when it will happen, but he is still on the omeprazole for that and it seems to be helping more than the prevacid was.  The blenderized diet seems to help, too...at least with the weight gain part.  I think the thickness of his blends does help him keep more of it down, so sometimes when he throws up it's just a tiny amount.  The whole thing is so baffling to me.  We all have our theories...maybe we shouldn't give him blend that is made the day before.  Maybe we moved him too soon after his feed.  Maybe he needs to be vented more, maybe less?  Who knows.  It's so random.  My latest theory is that he is just finally learning how to burp, so when he burps or coughs it triggers his gag reflex and he throws up because he just doesn't realize he doesn't actually HAVE to throw up!  Hopefully he will grow out of it soon, which, on the bright side, he is gaining weight.  It's a slow process, but at least the weight curve is moving in the right direction compared to what it was doing when he was just on the formula.

Eyes/hearing:  His vision is still one of his biggest blessings.  He definitely sees things.  He wears his contact lenses every day, and we still with the occasional lens popping out and panic on all fours as we try to recover it without losing our sanity.  His hearing aids are not quite as successful.  We had our follow up appointment last week, and we basically told her we aren't noticing a lick of difference.  He had them set at a really high amplification, and he didn't react to sound any differently than he did before.  Meaning, he doesn't react to sound at all, period.  It's actually a blessing in disguise because if it seemed like he could hear something, it might make the choice more difficult to go ahead with the cochlear implants.  Now there's no question that this is the way he is destined to hear.  So, I need to call House Institute this week and see if they would consider forgoing the rest of the hearing aid trial since it's pretty evident they aren't doing anything so we can get the ball rolling even sooner on the cochlear implants.  We are still working on adding new signs to our vocabulary as often as possible.  Ryan hasn't seemed to pick up any of our signs yet, but he does love to hit his mouth with his fist, which I'm going to go ahead and say is him just signing "mom" in his rudimentary way :)

Development:  Ryan still gets 4 hours of therapy a week.  He is showing some slow improvement, but he is still very developmentally delayed.  He had his latest IFSP meeting in August, and in most areas he scored at the level of a 4 month old.  With him being 18 months actual, 15 months adjusted, you can see how that is a pretty significant delay.  But, we've set new goals for him based on that information, and he definitely seems to get stronger and stronger every day.

General:  Life has been pretty crazy since we started back up to school this month.  My mom still comes to take care of Dani and help the nurse with Ryan while I'm teaching, and the nurse still comes to help with Ryan 5 days a week, 8 hours a day.  We are so, so sad to be losing the amazing nurse we've had with us since April because she is moving out of state.  She is going to be very difficult to replace.  Other than that, we have been busy with school, Spray Pal, Dani's back to school night and many other activities, in addition to trying to keep up with all of Ryan's home exercises for his therapies, etc.  I'm surviving off less sleep than I ever imagined possible (says the girl who's eyes are half closed while typing who normally needs 8 hours of sleep to function properly).  Coffee has definitely become a staple around these parts.  Thank God for all the blessings (like coffee, for example) that make this crazy, but wonderful, life possible!  And thank you all for keeping Ryan and our family in your prayers.  He's come a long way but still has a long way to go, and I know all of our prayers are being answered daily as we watch Ryan grow!

Hearing Aids

So, Ryan has been wearing his hearing aids for almost a week now, and I figure it's time to update since I'm sure you all are wondering if we are seeing any improvements.  Well, there's good news and bad news.  Bad news first:  they don't really seem to be doing anything.  But, I got that out of the way first because the GOOD news is that it really isn't shocking and it actually makes the choice to move forward with Cochlear Implants even easier!  The audiologist warned us that he probably wouldn't hear anything with them, even though they are turned up to the highest setting.  It means that his ears just don't have the ability to process sound.  So the next question is, will his brain have the ability to process sound?  The Cochlear Implants will basically bypass the ear and bring sound straight to the brain.  This was the whole reason I wanted to see a neurologist before we went down this road, and the fact that she was super optimistic about all of his behaviors while lacking the sense of sound is very encouraging. I told the audiologist how hopeful the neurologist was about the CIs, and she said that's great news.  Of course we won't know for sure what will happen until we actually try them out, but we are very encouraged that he will be a candidate since the hearing aids don't work and his ear anatomy is normal.

I have been reading up a lot of Deaf culture and the Deaf community, and I am very aware that there is a bit of a stigma associated with having a Cochlear Implant.  Some people may question our choice to have Ryan get them, but this is our reasoning.  1) He is a perfect candidate.  If there was anyone telling me that we could go through with this and it might not even help at all, I'd definitely reconsider.  But in doing our research and talking to as many medical professionals as possible, everyone seems to agree that he has a very good chance of hearing with the implants.  2) He is starting out young.  The best success rates for hearing and oral language seem to be with either post lingual adults who lose their hearing later in life after they have already acquired language and children who never had hearing or language and get the implants early on.  Ryan fits into the latter, and that is a huge advantage for him.  So, as long as his overall health permits it, we'll move forward the sooner the better.  But we're definitely keeping his lungs and heart at the forefront of our priorities, so if the doctors don't think he can handle that major of a surgery, we'll wait until he can.

We've also been asked if we are going to teach Ryan sign language, and the answer is yes.  Some institutes that provide therapies for CI recipients I've read will discourage their patients from learning ASL because they want them to focus on the oral speaking.  We are not of this mindset.  We taught Dani baby sign language from early on even though she is hearing because it's just another way to communicate your wants and needs.  We want to encourage Ryan to communicate in any way possible, and I don't think that learning ASL will prevent him from speaking orally.  Of course, there is still a ton of research to be done on our parts, but for now the plan is to finish up the 6 months hearing aid trial, start the road to CIs, and continue to teach and learn ASL along the way.

Thank you so much for your prayers and good thoughts as we continue along this journey!

Overdue update!

It's been a while since I've updated, and I love that people are so kind they actually ask questions like "How is the blenderized diet going?" when they ask about Ryan.  You guys are so awesome for still following along over here!  Big thanks to Michelle for inspiring this long overdue update tonight. ;)

GI/dietician:  We had our first meeting with the dietician around 2 weeks ago.  You may recall that this was about a month after we had already switched Ryan over to a blenderized diet, so we weren't sure how the appointment would go.  We were so pleased to find that she was completely on board with him getting real food through his tube, and she was impressed with all the research I had done to get him started.  Huge thanks to www.foodfortubies.com and the Blenderized Food for Tubies Facebook page for all the helpful information! 

She went over all the foods I typically put in his blends, and we discovered that I was giving him a bit more protein than he needed in a day.  Well, really, I was giving him WAY too much protein, which probably explained why his stools were a bit on the hard side (sorry, TMI).  He has been completely regular since the day we switched, but he definitely has those days were he's really pushing to get things going.  So, she gave us some suggestions for adjustments to make to cut back on some of the protein and add some extra fiber to make his stools softer.  We're still playing around with his recipes, but for the most part I think we have it down to what is going to work.  The main thing is, we want him to gain weight.  Dave suggested adding sugar (because, well, duh...who doesn't gain weight when eating lots of sugar) and she recommended using maple syrup!  In the two weeks since we met with her, he's already up over a pound!  We weighed him tonight and he's 18lbs 8oz, so he's finally back on an upward slope for his weight gain :)

Something else I found interesting was the number of calories they want him getting each day.  When he was on formula, he was getting just under 900 calories a day, and then when she added up the calories of these blends, they were between 1500-1800 and he still wasn't gaining weight, just maintaining.  She wanted to keep his blends in that calorie range, and just swap out some of the protein for carbs, sugars, and fiber.  So my one year old is eating the same number of calories as many adults!  The reason we came up with is because it's so much work for his body just to breathe, he's actually burning a lot more calories than most babies just working those lungs.  Plus he has all his therapy sessions and he's getting more active rolling around on the floor, so he needs a lot of extra calories just to keep the weight on.  I'm so glad we switched because giving him this many calories a day from just formula or pediasure would've been pretty crazy!

In other news, Ryan is getting so social and funny :)  He loves to be held and he has the cutest belly laugh when he really gets giggling about something.  We have our hearing aid fitting on Friday, so it will be exciting to see how he reacts to those.  He is still desatting to the low 90s/high 80s if his prongs come out, so no new news as far as getting the oxygen off any time soon, but the weight gain should hopefully help a lot! 

I'm sure I'm missing a lot, he amazes and impresses me every day with all he is doing.  Oh, we had his IFSP last week (for all you teachers out there, that's like an IEP for a child who is too young to be in school yet), and the Regional Center is going to continue providing all of his current therapy services at 4 hours per week.  We were hoping for an increase to 5 to have an extra hour with OT to work on oral motor skills, but they felt that we could just play with his schedule and use his Speech Therapist for fewer hours and switch her hours with extra OT hours.  The problem is, we love his ST because she is fluent in ASL and she does a lot of great work with him.  So, we'll probably just stick with what we have now.

Thanks for the constant love and support you send our way.  Even when the blog is quiet for a stretch, we are still constantly feeling blessed by all of you for thinking of our little man.