Master TJ's Birth Story & Special Needs Journey
Here's the story of Master TJ and what's gone on.....(I'll try and keep this updated as much as possible)
December 18, 2006
I am admitted to a local community hospital at 8:30am for induction of labor. At this point, I am a little scared but kinda excited to finally get to meet this little person that I have been carrying for 9 months. They wheel me back to the small labor room where they ask me to put on one of those wonderful hospital gowns. The nurse begins to do my vitals, blood pressure, weight, listening to my hearbeat, etc. Then she begins my IV of fluids and Pitocin. she places the fetal hearbeat monitor and the contraction monitor on my stomach.
A few hours later, I am beginning to feel contractions. My mom is helping me breathe through each one. I am beginning to get uncomfortable. The nurse comes in and checks me and says you are about 4 cm dilated. I tell her that the contractions are painful but tolerable. She readjusts the monitors on my tummy and then leaves. About an hour later, I am in some serious pain.The nurse checks me again and says I am dilated to 5 cm. She asks me if I would like an epidural. I am in tears at this point and I eagerly and tearfully agree. They wheel me across the hall to the labor and delivery room, where the anethesiologist is waiting to administer the much needed epidural.
After the epidural had been placed, I am beginning to get more comfortable, but now I am tired. I eventually fall asleep and the nurses tell my mom and my mother in law that the baby probably wont come until the next morning. Now as to what I am told, the nurses either turned down my Pitocin or turned it off. That was around midnight. At that point, I was 7 cm dilated.
December 19, 2006
Around 4 am, the nurse comes back in and turns up the Pitocin, checks me and says honey, you are about 8 cm dilated. She leaves and at this point, I am feeling intense pressure. around 6 am, the nurse comes in again, checks me and says honey, you are fully dilated...you can push whenever you feel like it. I begin to push, while the nurse, Sean, my mom and my mother in law are coaching me on.....to no avail. Around 8:30 am, my OB comes in and comments about why this baby was not born last night. He attempts the vacuum twice to no avail, to which he says C-section. (Now mind you, he told me at my 36 week appointment that I had cephopelvic disproportion, meaning my pelvis was not positioned right for me to birth a baby naturally,and that we were probably going to have to schedule a C-section anyway).....
Well I heard C-section and I began to freak out. My mom had to calm me down enough to tell me it needed to be done. So the medical team begins to take everything to the C-section surgery suite. They place a nice cap over my hair and give me an antacid to take. They give Sean his OR garb and tell him to get dressed and then after they get me all prepped, then he can come in and with that they wheel me down the hall to the surgery suite. I have never felt so alone, as i did at that point. The last image I have is of my mom crying and Sean just standing there in shock.
We get into the surgery suite and they drape the infamous blue sheet in front of my face. The anethesiologist injects a much stronger numbing medication into my preexisting epidural line. the lower half of my body goes completely numb. The doctor pokes me all over and asks me if I can feel anything, i say no, and he says ok, we are ready get dad!! So Sean walks in and has this scared look on his face, I ask him if he's ok and he responds...you shouldn't be asking me that....Im not the one getting cut open! LOL
They begin the C-section and are explaining everything they are doing. Then the nurse tells me honey, they've got the baby.....its gonna feel like suction cup feeling....then they say 1,2,3,and I feel tremendous pressure and then I hear the baby is out......I listen, but I don't hear any cry....I ask the doctor if its really a boy and they say yes...then i ask why isnt he crying.....i hear them flicking my son and trying to get him to cry.....its a few long tense minutes and then I hear he is stable and doing well. They wrap him in a blanket and tell Sean to bring him to me so I can see him.....I get to touch his sweet face and kiss his forehead before Sean goes with him to the nursery.....
They close me up and in the process, I get sick to my tummy...UGH! They wheel me to the recovery room and that is where I am until they move me to my room.
After my hour in the recovery room, they wheel me in my hospital bed to a room on the labor and delivery floor. I am groggy and a little out of it, but when I get to my room...my little TJ is no where in sight..My mom walks in and by the look on her face, I know something isn't right.
So the first words out of my mouth are where is my baby and what is wrong? My mom tells me that while TJ was in the regular newborn nursery, he began to have seizure like activity. The neonatologist on staff decides to have him moved to the NICU (neonatal intensive care unit)...
I am crying at this point and just as I tell my mom I want to go see him, the nurse walks in and says, i'm sorry honey but until your catheter is out, you wont be able to go see him. She tells me to rest and sleep and that I can see him the next morning. By this time, its late afternoon and my mom decides she needs to go sleep. So for the rest of the afternoon, I am emotional and groggy and just so confused..... Later that night, as visiting hours come to a close, my mom marches down to the nurses station and tells them to get a picture of my baby to my bedside.
December 20, 2006
That day was a blur to me....I remember getting to see TJ. I remember them telling me that there was something wrong.
That's about all I remember.....I remember the pain of my C-section scar and the agony of having to walk.....but I think I was so determined to get to TJ that I ignored it mostly.
December 21, 2006
Sean and I decided that the medical team there was NOT giving us any clear and complete answers and that we wanted to have TJ transferred to a bigger and better hospital for a second opinion. After a long, dragged out fight all day, the neonatologist finally comes in my room and tells me that the transfer to one of the best local Children's Hospital's has been scheduled for the next morning at 9:00 am, so if I want to see TJ, I need to be at the NICU door at 8:00 am....
December 22, 2006
Sean and I are at the door at 8:00 am, we walk into where TJ is, I sit down and I hold and rock him. Now mind you, he is connected to so many monitors and has 2 IV's...the main NICU nurse comes in and very rudely says you cant be in here when the transport team gets here.....well unbeknowence to her, they are right behind her....the leader of the Children's Hospital transfer team tells her to hush and then comes over to me, places her hand on my shoulder and tells Sean and I that we can stay if we want...
So sit there with big crocodile tears running down my face as they prep my 3 day old son for transport....about 30 mins later, they give me a few minutes to kiss him and then they load him up in the isolette and they tell me everything will be ok, we will take very good care of him.....i can still hear them saying that now.....
I go back to my room and i just bawl.......I tell my mom I wanna go home. The nurse comes in and says that the doctor wont let me go for 2 more days...my mom marches down to the nurses station and begins to give them a piece of her mind. She tells them that I have done everything that's required after a major surgery and she wants them to find my doctor and get him in to sign my discharge paperwork....so 4 hours later, my doctor comes in, does a physical exam, signs my paperwork and says ok you can go......and then as he is walking out says, "I'm so sorry for everything that happened to you and your baby" and then just walks out.
We pack up all my stuff and I get wheeled out in a wheelchair....I decide that even though its 7:00pm, I still want to go to the Children's Hospital to see Master TJ. So off we go.
This is my journaling I did while he was in the NICU....
January 08, 2007
TJ is doing really well. His feedings are being increased 1 cc every feeding. When I left tonight, he was up to 81 cc.
He is crying now and successfully sucking on his pacifier.
He is still being fed through a tube. He dosen't know how to nipple feed yet, but hopefully we can get him to that spot.
He will be having surgery soon. They will be putting a G tube into his stomach, that will allow us to bring him home and be able to feed him while he is learning to nipple feed. They are also going to tighten the sphincter that is between the esophagus and the stomach.His doesn't tightly close all the way and that is what causes him his acid reflux.......
January 12, 2007
TJ had surgery yesterday. He had a Nissen Fundoplication (which is where they bring the top of the stomach up around the esophagus...it helps minimize his acid reflux..he had it pretty bad..) and they also inserted a Gastrostomy Tube (G-Tube) (which is a tube that he uses to eat). He hasn't learned to suck and swallow the right way.
Once we can get him to nipple feed completely, the doctors can take the G-tube out.
He is currently on a small dosage of morphine and tylenol for pain.
He was doing alot better tonight. He had started getting fed again and was up to 21 cc's when I left.
He weighs about 10 lbs right now. We aren't exactly sure what he weighs, due to the fact he just had surgery.
January 13, 2007
TJ is doing much better today. He hasn't needed as much morphine and his incision is healing nicely. He is back on full feedings (84 cc's).
He was also taken off all IV fluids as well. The doctor told us today that they are looking to discharge him in a few days. So please continue to pray that TJ will meet all the requirements to be able to come home.
January 16, 2007
TJ had a rough day today. The bottom part of his incision had become very red and swollen. The doctor had to come in and remove a suture so that they could drain it. The culture on the fluid that came out tested negative for any infection....Praise God! They have him on three mega antibiotics to help his body fight anything that may come up.
He also had to get another IV as well. Because of him being so chunky, its very hard for the nurses to get an IV in.
After 3 pokes in the arm, 2 in the foot, 2 in the head, and 3 blown veins, they finally and successfully got it in his hand. So now he has one in each hand.
Other than that, he only needed 2 doses of morphine today.....Praise God for that too!
He currently weighs 10 lbs. 3 ozs.....he is still getting full feeds (84 cc's-which is roughly 3 ounces)via his G-tube.
January 17, 2007
Today TJ is 4 weeks old!!! He had a pretty good day today. His incision is doing much better. He also went without morphine all day today. Praise the Lord!
He is still tolerating full feeds.....he is very alert and active too.
He weighs about 10 lbs.
January 18, 2007
It was a good day for TJ today. He was very alert today. He had 2 small doses of morphine to help him when they had to pack his incision. The incision is healing very well. The antibiotics are helping alot.
Sean and I were able to give TJ a sponge bath tonight. As we had him all naked and were bathing him, TJ decided to pee all over Sean. It was so funny!
HE weighs 10 lbs and is still tolerating full feeds (84 cc's).
I will be talking to the doctors tomorrow to see what they have decided regarding TJ coming home.....
January 19, 2007
Praise God for another good day for TJ! He had NO morphine all day....:-)
He was very active and alert....He weighs 10 lbs. 4 ozs......what a big boy!
I will be talking to the doctors tomorrow about the timeline for when TJ can come home.
His incision looks WAY better. It is healing very nicely......
Please pray for me (mommy). I hate leaving TJ every night. I want to be able to rock him, hold him and just be his mommy in the comfort of my own home...don't get me wrong. The whole staff of the NICU at Loma Linda have been absolutely wonderful. The nurses are there to comfort you when you need it :-)Its so tough but I know that I will be able to bring him home soon....
January 20, 2007
Today has been a rough day. I got a call around 9:00 am that TJ had stopped breathing and that they had rescuistate him and put him on a ventilator. The doctors are thinking that he may have an infection and that was just his way of saying "hey, i'm not feeling so good".
They have him on clindomycin, vancomycin and one other antibiotic that I can't remember the name of. When Sean and I left tonight, he was stable and they had his ventilator settings set on the lowest.
January 21, 2007
TJ had a MUCH better day today. He was breathing so well that they took him off the ventilator. He was back to his regular self. The doctors have said that he had the beginning of pneumonia, but thankfully they put him on some mega antibiotics....Praise the Lord!!
Thank you for all the prayers....TJ gave us quite a scare......
He weighs 10 lbs 7ozs currently and is 21 inches long.
January 23, 2007
TJ is continuing to make progress. He is back on full feeds (85 cc's).
He weighs 10 lbs 6 ounces. He is only on one mega antibiotic, vancomycin. His body is still continuing to fight the staph infection and the beginnings of pnuemonia. He is such a little fighter.
January 24, 2007
TJ continues to amaze me. He is doing very well...still receiving full feeds and is active and alert. His lungs are sounding clear, which menas the infection is under control. Not sure as of yet when he will be coming home...but I hope soon. I also learned how to maintenance his G-tube...
January 25, 2007
TJ is doing well. He is still doing full feeds during the day (they have increased to 92 cc's). At night, he is on a pump that continuously feeds him from 9 pm to 6 am. The main reason for it is so that when he comes home, Mommy and Daddy will be able to get some sleep.
They are going to do a sleep study on him in a few days to test for sleep apnea.
As of now, he probably won't be coming home for at least 2 to 3 weeks. He is still on the mega antibiotic, vancomycin, which needs a 14 day course before the doctors can discontinue it.
January 26, 2007
TJ is doing well today. His doctor discotinued the vancomycin(the antibiotic) and the morphine....His first continous night feeding went well.
When I left tonight, they were doing the sleep study on him. It will determine if he has sleep apnea or not. If he does, he will have to go home on a apnea monitor.
Speaking of going home, it sounds like they will possibly be discharging us within the next 4 days or so.....so pray that everything will go well....I will keep you updated...
January 27, 2007
TJ IS HOME!!! YAY! They discharged him this evening at 5:00 pm.
As i type this, he is peacefully sleeping in his swing....
Thank you all for your prayers...I will still be updating his carepage. So be sure to check it now and then.....
January 29, 2007
Well the past few days have been ok....I have been feeding TJ every 3 hours through his G-tube. Tonight we get to start with the kangaroo pump, which is a pump that will continously feed him all night, so that mommy can sleep.....
He is doing really well.....I am so enjoying him being home....
February 01, 2007
TJ has been doing so well. He went to see his pediatrician on Wednesday. He weighs 10 lbs. 13 ozs. His pediatrician is Dr. Rhetta. She is one of the wonderful doctros that TJ had while he was in the NICU. She was so sweet, understanding and caring so we decided to make her TJ's pediatrician......
February 07, 2007
TJ is doing well. He is getting into a regular schedule now. The little chunker weighs 10 lbs 13 ozs!!! What's in my breastmilk LOL
Anyways, thank you all again for all your prayers and your support! I will update again soon! :-)
February 14, 2007
Happy Valentine's Day! Here is another update on TJ....
He has his 2nd appt. with his pediatrician, Dr. Rhetta, on my bday (the 28th). He will be getting his first set of shots...
He has an appt with the pediatric opthamologist, Dr. Khazaeni, on March 1st. He has a followup appt. with pediatric surgeon, Dr. Moores, on the 22nd. I haven't been able to set up his appts with the geneticist, Dr. Clark or the pediatric gastroenterologist yet, as they are on vacation.
Other than that he is doing well. He has been sleeping a little longer at night, which is a relief for me. He weighs 10 lbs. 14 1/2 ozs....
April 28, 2007
Just thought that I would give you all a quick update on TJ.
He currently weighs 12 lbs. 4 ozs and is 4 months old. He is still eating by way of gastrostomy tube, but is slowly learning to suck from a bottle. He will be starting full occupational (helping him learn to suck)therapy in a few weeks. He has a teacher from the Early Start program through the Moreno Valley Unified School District coming to do playtime with him once a week.
June 28, 2007
TJ is currently almost 7 months old. He has been bottling most of his feedings now. I have started him on rice cereal.....2 oz. each day and so far, he is handling it well.
We are concerned about his weight. At his last appointment, he only weighed 11 lbs. 8 ozs......
August 30, 2007
First off, let me say thank you to those of you who are continually praying for TJ....your prayers have been so appreciated!
My praise report (for those of you who don't know), is that TJ has not used his gastrostomy (G-tube) in 8 weeks.....he has been taking all food by mouth.
Today was TJ's well baby appointment and shots. He got 4 immunizations, one by mouth and three injections. He didn't really even cry, just made a mad face! :-)
His appointment went well. His pediatrician's main concern right now is that he has fallen off his growth chart. He is currently almost 9 months and he only weighs 13 lbs. 6 ozs. This may seem to most people as if he is just small...but he started off as an 8 lb. 13 oz. baby, so technically he should weigh more.
After giving Dr. Rhetta (his pediatrician) all the info about his food intake (formula, baby cereal and baby food), she determined that he is getting more than enough food; but she is puzzled as to why he isnt gaining alot of weight.
So she upped TJ's caloric intake. Dr. Rhetta also has oredered a full bloodwork panel, urine and stool samples, as well as an Upper GI Series and a Small Bowel Follow-Through ( The Upper GI is an x-ray of the esophagus, stomach and small intestine to check for any blockages or adhesions and the small bowel followthrough is an xray with a barium swallow so they can check if absorption is happening as well as check for blockages and/or adhesions).
Dr. Rhetta is hoping that the reason he isnt gaining weight is simply because his metabolism is just way too fast.....but she ordered the bloodwork and GI series, just to rule out Celiac Disease or possibly cystic fibrosis.
September 14, 2007
TJ had bloodwork done last Friday (09-7-07).....We should be getting results sometime next week. The bloodwork will determine if he has Celiac Disease or Cystic Fibrosis. His Upper GI Series is being done this coming Monday (09-17-07).
We saw TJ's pediatric neurologist yesterday. That appointment went well. The neurologist suggested that there is a possibility that TJ might have Prader-Willi Syndrome, but he doesnt want to make a confirmation on that until we see the geneticist (which wont be until December).....
September 17, 2007
Well today was TJ's visit to Pediatric Radiology to have his Upper GI/Small Bowel Follow Through Test done....
It went very well....TJ did amazing, despite the fact, the little guy hadnt eaten in 10 hours!
It looks like he has a herniated area in his esophagus, which is causing a stricture (narrowing) of the esophagus. That's about all they would tell me for now.....I have to call and get an appt with the pediatrician to find out complete results on that as well as the bloodwork. Surgery may be a possibility.....
October 22, 2007
Today TJ had a appointment with his GI (gastroenterologist). He said that TJ is still not gaining weight as appropriately as they want. So his doctor prescribed him Reglin (which will help his digestive system move along faster).....he then wants me to feed TJ as much of a 5 oz. bottle as I can in 20 mins, and then whatever he doesn't finish, I have to administer by his G-tube. Then we are to go back in 8 weeks for a followup appointment to see how much weight he has gained......
As for results on tests, here's where we stand on each one right now:
Bloodwork (to test for Celiac disease and cystic fibrosis)....the results are in, we will be getting an explanation at his next pediatrician followup
Upper GI/Small Bowel Followthrough.....the preliminary results show he has a moderate hiatial hernia and his previous surgery has slipped...we will get full results at the next pediatrician appt.
Echocardiogram.....Still waiting for our insurance to approve
MRI......Still waiting for our insurance to approve
Bloodwork (for complete chromosomal check)......waiting for the lab, doctors office, and insurance company to confer and approve.....
Re: Master TJ's Birth Story & Special Needs Journey
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.
Re: Master TJ's Birth Story & Special Needs Journey
Present (April 30th, 2011)
Master TJ is currently 4 years old. He has a Rifton bath chair, a Sammons Preston Tumbleform feeding chair, a Quickie Zippie TS wheelchair, a Rifton stander, his AFO's (leg braces) and will soon be getting a Rifton gait trainer.
He is currently not in school , due to some school issues that took too long to resolve, but will be attending his final year of preschool starting August 10th, 2011.
He still has his gastrostomy tube (G-tube). We use it for medicine intake and supplemental feedings (if he has day where he isnt eating well orally).
He still has GERD (gastroesophgeal reflux disease), and takes Pepcid and Reglan for it.
As of right now, his diagnosis stands at moderate cerebral palsy, moderate developmental delay (he's about 2 years old in a4 year old body), and moderate mental retardation (just got moved to moderate from severe....so that's an improvement).
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