Friday, October 30, 2009

New news

New pictures will be available soon. I have some really cute ones. What do I start with first, the good news or the bad news? I guess I will start with the bad news then the good news. Abraham was diagnosed with cerebral palsy. The neurologist based the diagnosis on the MRI that he had in August, his motor development, he is behind his peers at his adjusted/corrected age of 6 months, and the history of brain insult. Amazingly I did not cry until I was driving to the ferry to go back home. Glenn had duty (works all day and all night, for those non-military types) so he received the news by a text message then a phone conversation. I was told all a long that there was a strong possibly of CP. If you don?t know what CP is please see this website: http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm. We don?t know what degree he will be affected since there is a wide range. One of the clerks at Childrens has CP however she is smart, walks without any assistance devices and speaks and hears well. She has worked there for over 24 years and is very helpful to us. She always remembers us when we are there and says hi. Abe?s CP might not be as mild but the good news: HE IS NOT GOING TO BE A VEGETABLE! He moves all of his extremities still however he is stronger on the left side. His head and trunk control has improved and if the speech therapist approves it he will be moving on to solids. He smiles socially and loves to play with toys that make noise. He tracks with his eyes however not a well as his peers. He might need glasses. He sees eye doctor in November. He says, ?Mama, mama, mama?. I try to get it on video but it is difficult to get the voice and he in the picture. Glenn got me a microphone for the computer. Maybe I could just record it and post it somehow. We got the microphone so that we could record ourselves reading to him while we do the dishes or clean. He seems to enjoy noise. Nutrition: he is gaining weight without feeding tube, however he has good days and bad days so we might have to use it again, he was 15 pounds 7 oz. the GI doctor is suggesting adding a carbohydrate substance to the breast milk for increased calories and has ordered an upper GI series to rule out structural abnormalities that might contribute to the GERD. He has projectile reflux once a day. Respiratory: still on oxygen, we see occasional low oxygen however we are trying to see how he does without it. He sees pulmonary next month. We are hoping to lose all the medical equipment. Some advice I have for parents out there, never take your child no matter his/her age for granted because you never know what might happen at any time. There are babies still in the hospital that were there when Abe was there. I think his former NICU room mate is still on the medical unit. I have not seen him or his mother since August. I am going to check on her next time we go however with the flu season here I don?t think it would be a good idea to take Abe to the unit where children are on ventilators. He is around other children at church and MOPS. Some never have been home; some went home for a little while then were re-admitted. I also met some families that have a ?normal kid? that are diagnosed with cancer or other chronic illnesses. It changes your life however I think I can handle a child with CP. I don?t know if I would have the patience to deal with autism however. So God gave me what I could handle. The road won?t be easy but it is what it is. I can?t put him back inside and make him perfect in the worlds? eyes. He is perfect in God?s eyes. On a different note: Glenn might be going to another state for school for 3 months then will be deployed for 1 year. This makes me a little nervous since someone tried to break in to the house last week while we were at the doctor?s office. The front door lock was broken but nothing other than a small package of medical supplies that we never received was taken. For those concerned about the flu, a friend sent me this on face book: Dr. Vinay Goyal is an MBBS,DRM,DNB (Intensivist and Thyroid specialist) having clinical experience of over 20 years. He has worked in institutions like Hinduja Hospital , Bombay Hospital , Saifee Hospital , Tata Memorial etc.. Presently, he is heading our Nuclear Medicine Department and Thyroid clinic at Riddhivinayak Cardiac and Critical Centre, Malad (W).

The following message given by him, I feel makes a lot of sense and is important for all to know.

The only portals of entry are the nostrils and mouth/throat. In a global epidemic of this nature, it's almost impossible to avoid coming into contact with H1N1 in spite of all precautions. Contact with H1N1 is not so much of a problem as proliferation is.

While you are still healthy and not showing any symptoms of H1N1 infection, in order to prevent proliferation, aggravation of symptoms and development of secondary infections, some very simple steps, not fully highlighted in most official communications, can be practiced (instead of focusing on how to stock N95 or Tamiflu):

1. Frequent hand-washing (well highlighted in all official communications).

2. "Hands-off-the-face" approach. Resist all temptations to touch any part of face (unless you want to eat, bathe or slap).

3. *Gargle twice a day with warm salt water (use Listerine if you don't trust salt). *H1N1 takes 2-3 days after initial infection in the throat/ nasal cavity to proliferate and show characteristic symptoms. Simple gargling prevents proliferation. In a way, gargling with salt water has the same effect on a healthy individual that Tamiflu has on an infected one. Don't underestimate this simple, inexpensive and powerful preventative method.

4. Similar to 3 above, *clean your nostrils at least once every day with warm salt water. *Not everybody may be good at Jala Neti or Sutra Neti (very good Yoga asanas to clean nasal cavities), but *blowing the nose hard once a day and swabbing both nostrils with cotton buds dipped in warm salt water is very effective in bringing down viral population.*


5. *Boost your natural immunity with foods that are rich in Vitamin C (Amla and other citrus fruits). *If you have to supplement with Vitamin C tablets, make sure that it also has Zinc to boost absorption.

6. *Drink as much of warm liquids (tea, coffee, etc) as you can. *Drinking warm liquids has the same effect as gargling, but in the reverse direction. They wash off proliferating viruses from the throat into the stomach where they cannot survive, proliferate or do any harm.



Stay healthy all...

Sunday, October 11, 2009

10/11/09 (2nd attempt, first one did not save)

Abe gained 1 pound in 2 weeks. He is 14 pounds 12 oz now. He reached a point where he wanted to eat without use of the appetite stimulate so I discontinued it. Also he was not really using the feeding tube. Wednesday night when it came out I left it out. He is wanting to eat 7 or more times daily. Plan to call his on Tuesday to confirm decision. She is a great doctor. She verbalized that the parents know what is best for their child(ren). He has CT scan this week and sees neurosurgeon. Please pray that the CT scan shows improvement that will amaze the neurosurgeon and the resident or fellow that is working with him. (If this is God's will). We think he had a virus that caused him to have decreased appetite, ect. We are trying to normalize our life by going to a MOPS (mother's of preschoolers group), Tuesday morning Bible study, monthly lactation lunches, Saturday night church, Sunday school class, WII fit plus (did Yoga the other day and I am still sore) and playing games with friends. Abe is smiling more and more aware of his surroundings. His GERD is causing him problems. Dad fed him, laid him in his bed, then dad fell asleep. Not even 5 mins laters Abe desated (low oxygen), was coughing then crying so I restarted him back on his prevacid. We tried Zantac however it taste bad. Please also pray for breast milk production. I am still pumping, 8 1/2 months now, and my supply has gone way down. I am using some of the frozen, more room for food in deep freezer. I want to keep him on breast milk to protect him during cold/flu season. I read that Yoga can increase milk supply by increasing circulation to the milk ducts. The day after I did Yoga my supply did increase. However I don't think Yoga is the only reason for that. I am also learning to make the transition from professional, working women to stay at home wife and mom. I have learned some useful steps now I just need to put them into action. Before grad school I worked 6 jobs to pay off debt. My condo was a mess but I was able to move to WA, get a masters degree in nursing, make new friends and get my MRS. degree too. I should get back to dinner, already messed up the spaghetti noddles once tonight.