Master TJ's Birth Story & Special Needs Journey
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April 30th, 2011, 07:04 PM
Join Date: Jan 2011
Location: Southern California
December 19, 2007
Today is TJ's 1st Birthday! Wow, where did the year go? God has definitely brought us through this year......please continue to keep TJ in your prayers. I will post an update tomorrow after his appointment with his pediatrician!!
January 28, 2008
2008! What a beginning! Here we are at the end of January and I realized that I totally forgot to post an update after TJ's drs. appt in December.....
TJ saw his pediatrician on December 20th, 2007. He had his 9 month shots (he is still behind).
He was 26 inches long and weighed 15 lbs. 8 ozs. His pediatrician is still concerned because he is still somewhat underweight. TJ will be having some follow-up bloodwork done in February or March to re-test for any gastro issues.
Today (January 28, 2008), TJ had an appointment with his pediatric gastroenterologist.
He was 27 inches long and weighed 16 lbs. 3 ozs.
The GI doctor recommended that I stop using baby formula and begin using PediaSure. He said that TJ isnt ready for real milk quite yet. He wants him to get to 20 lbs. before we switch to real milk.
So he gave me a prescription for the Pediasure to use for the WIC program. So I am going to apply for WIC this week. Because PediaSure is an over-the-counter supplement, my insurance company wont cover it, so WIC would be the best way to get it as its expensive.
Tomorrow, TJ has an appointment with another genetic doctor from Inland Regional Center. This appt. is for an evaluation and consult for genetic bloodwork. So please pray that all goes well....
I will update tomorrow after we get back.....
March 01, 2008
Another update on TJ....
We took TJ for an echocardiogram on February 25th. This was a followup to the one that was done when he was born. At that time, it showed that his aorta (the large artery that leads from the heart) was slightly enlarged (12 mm)
Well the echocardiogram on the 25th showed that his aorta has enlarged some more. It was up to 17 mm. The secondary reason for having this done was to see if we could rule out Marfan's syndrome (Marfan's Syndrome) which is what my brother Matthew has.
The cardiologist told me that she was ruling out Marfan's and instead focusing on Loeys-Dietz Syndrome (Loeys-Dietz Syndrome).
Our next step is to have genetic bloodwork done on all three of us (Sean, TJ and I) that way we can 1) see if TJ tests positive for that syndrome, 2) see which one of us carries it and 3) make a determination on what the percentage would be on Sean and I conceiving another child with the same disorder.
So please pray. We are going back for a follow-up echocardiogram in August.....which will then determine our next course of action......
March 10, 2008
Last Tuesday (March 4th), we took TJ to his neurologist appointment. The neuro has said that everything looks good. I told him that we have an MRI scheduled for April.
While we were there, the geneticist came in to see us. She recommended that we have a chromosomal array done (which is a blood test that will show any syndromes or genetic disorders that TJ might have).
So we had his blood drawn for that.....I'm not sure yet as to when we will get results on that.....
Please keep praying.....I will update again soon!
March 21, 2008
Latest update on TJ.....
On March 19, 2008, he had his annual review with his service coordinator from Inland Regional Center and his special education teacher from Rainbow Springs.
All in all, it went well. His "developmental" age is about 6 months and his "comprehension" age is about 10 months.
So he is developmentally delayed by anywhere from 5 to 9 months.
Our goals for the upcoming year are to get TJ to be more independent (i.e., holding his own bottle, finger feeding and such) and to also help him strengthen his muscles so he can begin to learn to crawl.
He has an occupational therapist that comes in home for an hour, 2 days a week (Thursday and Friday), a physical therapist that comes in home for an hour, 1 day a week (Wednesday), and his special education teachers that come in home for an hour, 1 day a week (Fridays).....
TJ had a chromosomal array (bloodwork) done on March 4th. We won’t know any results for 4-8 weeks. This test will show any genetic disorders or syndromes that TJ may have.
And as for upcoming appts,
He has an appointment with a neurologist from IRC on April 9th.
He has a scheduled MRI at Loma Linda University Medical Center on April 14th.
He has a well-baby/immunization/followup with his pediatrician on April 23rd.
April 09, 2008
Well we took TJ to see another neurologist today, for a second opinion. (She is the chief of pediatric neurology at the children's hospital where TJ was in the NICU).
Well long story short, this neurologist thinks that TJ might have mild cerebral palsy.
She says for right now, that we need to wait for the results of the genetic bloodwork that we had done a few weeks ago.
She says that the mild cerebral palsy could be the actual issue, or it could be a symptom of a syndrome that might show up in the bloodwork.
So yeah, I was a little shocked but kinda at the same time relieved to know that maybe we are a step closer to getting a complete diagnosis.
May 10, 2008
I know its been a month since I updated.
TJ had an MRI scheduled for April 14th, but due to someone "not doing their job", we had to reschedule it for May 21st.
On April 23rd, TJ had his well baby check and shots (well it was just one this time).
Everything is looking good. TJ is finally back on a growth curve. He weighs a little over 17 lbs. and is 27.75 inches long.
During this appointment, I informed the pediatrician that the last neurologist that we had seen had mentioned the possibility that TJ has a mild form of cerebral palsy.
So his pediatrician tells me that there is a possibility that the mild form of cerebral palsy could have been caused by an anoxic brain injury (as known as hypoxia, basically meaning that his brain went without oxygen), but then she quickly follows it up with "its a possibility, we will need to wait and see the outcome of the MRI".
So, right now we are waiting to do the MRI and see what shows up there.
Our most exciting news of this past week was that TJ qualified and got approved for SSI! It only took 9 months!
I was so shocked and relieved knowing that this is another battle that I have won for TJ.
Right now, we are still waiting to be re-approved into CCS. They will help us with any medical equipment TJ may need (i.e., specialized highchairs, sitting chairs, strollers, bath chairs, etc.)
Right now, the upper half of his body is alot weaker than the bottom half.
I (with the help of a physical therapist and an occupational therapist) are working on strengthening his head, neck and trunk muscles. The next big milestone that TJ needs to accomplish is sitting up.
So please keep TJ (and Sean and I) in your prayers.
Everything seems to be coming together and beginning to work out.....
May 22, 2008
Whew! It's 11:30 pm and TJ is asleep for the night.
Today was a very emotionally draining day for me. We waited for about 45 mins and then the nurse came and got TJ and I (DH and my mom waited on the waiting room).
They explained that TJ would need to be sedated and so they needed to put an IV in. Well my poor little man endured 4 tries until they FINALLY got one in. Listening to him cry for almost 20 minutes took a toll on my emotions. Once they got the IV in, they gave him the sedation medicine orally (the IV access was for emergency purposes during the MRI and for giving him fluids after the MRI).
He was out in about 20 minutes. DH and I got to walk back with his gurney to see where he would be and then we had to go sit in the waiting room for the duration of the MRI (35 mins).
About 45 minutes later, the nurse comes and tells us we can follow her while she takes TJ to recovery. So up we go to the Pediatric Recovery Unit ( which is used for kids coming out from sedation or for kids just coming out of the OR).
They tell us that they are going to give him 160 mL's of saline through his IV to help "flush" out the sedation medication (because its really tough on the kidneys).
So they do that and they also give me a small bottle of apple juice with a nipple to give him something sweet to take orally.
We are in recovery for about an hour and then the nurse comes in, takes out his IV, signs all his discharge paperwork, and then tells us we can go home!
She pretty much told me that he was going to be sleepy for the rest of the day. We got home around 7:00 pm and he had 8 ozs. of Pediasure. My mom is here helping me out, so she rocked him and put him to sleep.
I got the best compliments from two nurses who told said...."You are such an awesome mom and such a trooper"......
Anyways, here are 2 pictures that I took with my phone of TJ in recovery. He was watching baseball on TV with DH.
June 11, 2008
So, today we got the preliminary results on TJ's MRI.
There was no bleeding or tumors....Praise the Lord!
The only thing so far is that he has brain shrinkage, meaning his brain is alot smaller compared to those of kids his age.
The detailed MRI results will be given to us at his next appt with his pediatric neurologist. (I have to make the appt. on Monday)
Nov 17, 2008
TJ has done alot of appointments; in fact, we have 2 appointments tomorrow (Nov 18th-genetics and well baby) and then 2 on Thursday (Nov 20th-echocardiogram w/ sedation and cardiology
consult. We don't have a diagnosis as of yet, so please pray that one would come soon. TJ's 2nd Birthday is next month!!! I can't believe my baby will be 2! I'll update again after all the appointments.
Mar 27, 2009
Here it is 2009! I know I haven't updated in awhile, but I promise I will keep this more frequently updated. Thomas turned 2 on December 19th, 2008. It doesn't seem like that long ago, I was updating this page every night after coming hom from seeing him in the NICU.
He is receiving in-home physical therapy and special education right now.
In about 3 weeks or so, he will be receiving physical therapy and occupational therapy at the Moreno Valley Medical Therapy Unit on the campus of Rainbow Springs Preschool (which is a special needs preschool).
He will continue to receive special education in-home, until we are able to move back into the Moreno Valley School District and then he can attend preschool classes at Rainbow Springs.
He is developmentally delayed. His biological age is 2, but he is ranging anywhere from 9-18 months in development.
As of right now, the preliminary diagnosis (not confirmed fully yet) is mild cerebral palsy.
His chances of walking, sitting, crawling and doing mostly anything on his own are all dependent on how he responds to therapy. He has bouts of hypotonia (infants & toddlers with hypotonia seem floppy and feel like a "rag doll" does when held. They rest with their elbows and knees loosely extended, while infants with normal tone tend to have flexed elbows and knees. Head control may be poor or absent, with the head falling to the side, backward, or forward)and hypertonia (Hypertonia is an upper motor neuron dysfunction marked by an abnormal increase in tightness of muscle tone and a reduced ability of a muscle to stretch (i.e. an increased stiffness). Hypertonia is usually a feature of spasticity in particular muscles. These features are common in cerebral palsy.). He is doing better at head control, but still can't fully hold his head up on his own for an extended amount of time.
He is still not able to sit up on his own unsupported or crawl.
Walking may be an issue. There is a possibility that since he has moderate hypertonia in his hamstrings that he may need braces to walk.
So anyways, we have a few doctor's appts coming up, so I will update on those.
Jun 10, 2009
TJ's appointment went better than I expected.
He is 31 inches long and weighs 21 lbs. 3 1/4 ozs.
So long story short, the pediatric neurologist (after completing a thorough exam at my request) has come to the conclusion that Master TJ just might have cerebral palsy. He explained to me that in TJ's last MRI it showed that he had mild periventricular leukomalacia, which may be the explanation of the cerebral palsy. He is going to be scheduling an EEG for TJ soon. He did confirm that TJ did have a seizure and pretty much told Sean and I that the chances of him having another one are not calculable, but that seizures are common with cerebral palsy.
So he said that while the unofficial cerebral palsy diagnosis is there, he isn't going to change it at all, but that he won't officially make the diagnosis until after TJ turns 3. (in 6 months).
I was very proud of myself though. He started using a ton of medical terminology and I politely stopped him and said, "I just graduated from an advanced medical terminology class at the top of my class so I know everything you are saying right now".
He used normal terms the rest of the appointment.
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